I find the scientific challenges and progress toward treatments for rare diseases to be very intellectually stimulating and satisfying.  Although I have not been directly affected by one of these disorders, the strength, resilience, and bonds of this community compel me to do more.  I truly enjoy being with these people.

But why would SP get involved?  Why show up at a congress that is clearly designed for the biopharma industry?

The simple answer is because the event attracts hundreds of Participatorians.  Rare patients and families practice participatory medicine (PM) with their providers all the time, and vice versa.  They have no choice.

They will be very interested in what we have to say because we are putting a name to what they already do.  And we are very interested in talking to them so that we can learn how PM works under the most extraordinary circumstances.  They can teach us what patients and providers really need to make PM easier.  They can also teach us what gets in the way – believe me they are well-versed in the need for EHR interoperability.

A quick scan of the agenda reveals a smorgasborg of topic areas: basic scientific innovations, public policy, data & technology, ethics, i

nvesting, marketing, regulatory affairs, representative clinical research, mental health, and insurance.  The sessions include large audience plenary sessions, smaller group deep dives, and even individual posters.

And in the center of all this action is the Expo Hall, where we will have our booth.   We are fortunate that our booth sits right near the entrance to the Café.  A prime traffic area.

The point is that while the Congress provides many opportunities to learn, it provides an even greater opportunity to talk to a wide sp

ectrum of stakeholders interested in PM. We have the opportunity to introduce them to our thinking. We have the opportunity to invite them to join in our effort.  We have the opportunity to grow our network.

But we need your help!

We need SPM members present at our booth from breakfast until the happy hour reception.  We are looking for people to take 1-2 hour shifts on June 10 and 11 (June 9 does not include the Expo Hall.)  All you need to do is welcome people, tell them about PM and SPM, and hand them information.

lease contact Mary Hennings or Kevin Freiert if you can help, or if you want to learn more.

We have complimentary passes for full Congress access for all three days.  You can request yours at WODC@participatorymedicine.org

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Editor’s Note: Kevin recently spoke with Cait DesRoches, who was named Principal Investigator for the Society of Participatory Medicine’s signature project, CHAMP, the Collaborative Health Care Action Measurement Platform. This is Part 2 of that interview.  Part 1 can be found here: https://wp.me/p8S1TQ-61B.

Kevin: So that’s the good side, the benefits. What are the big challenges to developing an instrument like we envision in CHAMP?

Cait: Survey work is tricky. How you ask questions, the order in which the questions are asked, all of those things make a difference in the answers that you get. So, the first challenge is just making sure that we do a really thorough job in understanding how our primary targets for the survey, right now that’s patients, talk about and conceive of the idea of participatory medicine. If we get that wrong, then it’s very easy to create a survey that doesn’t actually measure the thing that we want to measure. So that’s our first challenge is doing a lot of due diligence around how people talk about this. Do they understand the questions that we’re asking in the way that we understand them?

Often there’s a disconnect between how a researcher or a group that lives and breathes this stuff understands something and how someone who is new to the idea or frankly has never even thought of it, how they understand it. So, we need to be really careful to make sure that what we’re doing really reflects the thing we want to capture.

Kevin: Yeah, there’s a wide range of people that we’re reaching out to here. And the differences in how they see healthcare are based on what they’ve experienced and lots of other factors as well.

What are the steps over the next six to 12 months we’re going to need to take to move this project forward?

Cait:  First, we’re going to start with some in-depth interviews that we’ll do with community members and stakeholders to understand what they think about this measurement platform. How do they talk about it? What words do they use?

From there, we’ll start to draft a draft survey. That’ll go through a lot of revision with the Society for Participatory Medicine (SPM) research subgroup.

Then we will do a process called cognitive testing. And there you recruit people to take the survey and then you ask them to think aloud as they’re taking it. There you’re surfacing misunderstandings or where you, the researcher, got something wrong, or your respondents think about something in a completely different way, or your survey question doesn’t make sense, or it’s impossible to answer.

And you do a bunch of those interviews and then you revise and you do more of those interviews. At some point, we’ll also have to ask our human subjects committee to review our project and make sure that we’re adhering to the sound principles of human subject research. Then when we finally get through all of that, we’ll pre-test it.

We’ll make sure that it works technically. Surveys often have branching logic or skip logic, where if you answer a question a certain way, then you go to one set of questions. If you answer it the other way, you go to another set of questions. So we will be hammering the survey with as many people as we can get to practice with it and make sure that everything is working.

Once everything is working, then and only then will we go to actually fielding it with real live people, people who have never heard of the idea of participatory medicine. And we’ll go out into the world and we’ll field the survey.

And then once we’ve finished that piece, we’ll do a lot of analysis to make sure that our questions really measure what we think they’re measuring, that they hang together in the way that we think that they should, that we can feel confident in the results and then it’s ready to go out into the world.

So that whole process will take at least take six to 12 months.

Kevin: That’s a ton of work. How are you feeling about getting started on that big project? Because I know we’re excited.

Cait: I’m excited. I cut my research teeth on survey development. So, I love surveys. I love doing this kind of work. To me, it kind of scratches the itch of both serious attention to detail and really getting to understand how people think about things. Both of those things, I just love doing.

I love doing survey work, so I’m very excited to get started.

Kevin So let me give you your own open mic here. Is there something I didn’t ask you about that you want to make sure everybody knows?

Cait: The one thing I would want to be sure that everyone knows is that this idea of measuring participatory medicine is really new. When OpenNotes first started, I was not the director. I was in another research group across town and watching what they were doing and thinking, “They are nuts.  There is no way this is ever going to happen. They’re never going to get clinicians to share their notes with patients.” It went from that idea people thought was crazy to now it’s just way things are done. It’s a federal regulation.

I think that the idea of participatory medicine is still in the stage where we have to explain what it is. How it is just different from patient engagement or shared decision making. We’re at that early stage and that kind of work is very exciting. So, I’m just, I’m just thrilled to get started.

Kevin: I love the way you framed that. It’s like something crazy happened, and we’re going to step into the crazy path again and see if we can make something new happen.

I just want to thank you very much for your time this morning, and for joining the cause. We’re really looking forward to it.

Cait: Thank you, I’m looking forward to getting started.

If you’d also like to get started and want to know more, or help with CHAMP development, send an inquiry to champ@participatory.org.

The post Introducing the CHAMP Principal Investigator: Cait DesRoches (Part 2) appeared first on SPM Blog.

Editor’s Note: Kevin recently spoke with Cait DesRoches, who was named Principal Investigator for the Society of Participatory Medicine’s signature project, CHAMP, the Collaborative Health Care Action Measurement Platform.

Kevin Freiert: Cait, can you tell us a little bit about yourself and your current work?

Cait DesRoches: My name is Cait DesRoches. I’m a researcher and a faculty member at Beth Israel Deaconess Medical Center in Boston. I lead the OpenNotes Initiative, which is a group of clinicians, researchers, patients, care partners all focused on the idea of how can we use transparency, particularly information transparency for patients, to improve care. That work involves a lot of pilot studies to see what’s the best way to do this? How do we know that it’s working? What is important for patients? What’s important for clinicians? As we move through this new world where patients have access to their health information at their fingertips.

Kevin: It’s a fantastic initiative and it’s starting to grow.  What has your work on OpenNotes taught you about the value of participatory medicine?

Cait: Transparency, a foundational piece of participatory medicine.

If clinicians and patients are not on the same page, if they’re not working off the same set of information, then there’ll always be a power differential between the patients and the clinicians. If I go to the doctor, and I don’t understand what that doctor is thinking or what they are planning for my care, because it hasn’t been shared with me, then I literally can’t participate in it.

And then from there, we need to create an environment in which patients and families are empowered to take that information and really engage with it and really use it to participate with the clinicians in understanding their own care, understanding their own health, and making decisions together about what needs to happen.

Kevin: Absolutely. As you get started working on the CHAMP project, it’s a measurement platform. So why do you think we need to measure the “participatoriness” that we see out there in the world?

Cait:  That’s a great question. In the world of healthcare, we measure everything. We measure how many people got their screenings. We measure how many people were readmitted to the hospital. All of those things are measured because we want to improve them. Either the healthcare system is getting an incentive to hit a target or a disincentive not to hit a target.

But without measurement, we don’t know where we are and then we can’t work to improve it. So, it’s key to have a valid way to say to an organization, “Hey, here’s where you are at your baseline. Here are strategies to help you improve. And here’s where we are going to come back and measure again next year and see how you’re doing.”  We want to give organizations and patients a way to see, “Am I making progress?”  Without that measurement, we just have no idea.

Kevin: So that’s great explanation of what we’re trying to measure and sort of why. But in the bigger picture, what are you hoping that we will achieve by establishing CHAMP?

Cait: Yeah, when you take the time to carefully design a tool to measure something, it means that that thing is important. So by making the thing important, it becomes a story that can start to spread.

The measurement is not the goal. The measurement is to have organizations say, I want to get an A on that thing, or to have patients say, I want to improve my own readiness to participate. Putting a number on something, giving something a score just helps to impart the idea that you ought to be paying attention to this.

Kevin: Yeah, like I’m obsessed with my sleep scores now. And it’s just a number.

Cait: That’s right. Why do I think our phones tell us how many steps we’re taking? Because we want to know how we are doing and without a number, without some kind of a measurement, it’s hard to know on a population level how we’re doing.

Kevin: Exactly.

That introduces another question. What are some of the benefits that collecting and disseminating data about the actions that patients and their providers take to work as a team? What are the benefits we hope to see as they change their behaviors?

Cait: We know from a lot of research that patients who are more engaged in their care do better. They have better outcomes. But we also know that engagement is challenging for patients. We know the environment does not encourage it. It’s rare for a healthcare organization. And not because they’re run by terrible people, but this is a business. Healthcare is a business. So, it’s rare to have an organization really prioritize creating the conditions that allow for a participatory relationship between a patient and a clinician.

But we know that engaged patients do better. We want to create… help to create those environments.

So…

I would expect to see in a really participatory environment that patients are doing better. They feel more in control of their care. They feel more ready to engage in shared decision-making. They understand what they’re supposed to do next and not only what they’re supposed to do next, but how they’re supposed to do it, with supports in place to help them do it. Those are the things that I would expect to see.

And I know that the industry is interested in hard clinical outcomes like whether blood pressure is under better control or hemoglobin A1c scores are better. But what I expect to see first is a cultural shift. And that cultural shift is just as important as those hard outcomes, which I think we could get to. But first, I would expect to see just an environment that encourages participation.

Part 2 of this interview can be found here: https://wp.me/p8S1TQ-61K.

The post Introducing the CHAMP Principal Investigator: Cait DesRoches (Part 1) appeared first on SPM Blog.

The Everylife Foundation for Rare Diseases (ELF) held their annual Community Congress meeting on December 11, 2025 at the National Press Club in Washington, DC.   The Community Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and initiatives pertinent to the rare disease community. It comprises four permanent working groups that meet at least quarterly to advance federal and state legislative and regulatory policy solutions. These working groups help set direction for the Everylife staff work throughout the year.

Workgroups

We heard about the stormy skies and sunny spots during a very tumultuous 2025.  The significant changes in policy, philosophy, and even personnel ushered in by the current administration created several challenges.  However, the rare community is naturally resilient and stepped up to find solutions.

Newborn Screening & Diagnostics Workgroup: Thirteen US States have now adopted the Recommended Uniform Screening Panel (RUSP) for newborns; covering roughly 52% of all newborns in the country.  The other states continue to operate as a patchwork of different screening panels.

Public Policy Workgroup: The headwinds have been strong for this group. Even so, the Give the Kids a Chance Act, which includes reauthorization of the very successful pediatric Priority Review Voucher (PRV) program, has passed the House and is now before the Senate.

Regulatory Workgroup: In the midst of all the turbulence at FDA, the Rare Disease Innovation Hub has been setting a strong foundation.  Their two RISE (Rare disease Innovations, Science, and Exploration) workshops in conjunction with the Duke-Margolis Institute for Health Policy have been very well received and more are planned for 2026.

Access and Value Workgroup: Commissioned a study on the utilization of Medicaid resources for rare disease patients across all the states.  While the data are still under review, some interesting insights have already emerged.

Value

The Society for Participatory Medicine (SPM) is a non-profit organization member of the Community Congress.  This membership is mutually beneficial.  Active participation in the Everylife Foundation events, including Rare Disease Day on Capitol Hill and the Community Congress, raises the awareness of SPM and participatory medicine in general.  The interactions with other member organizations also provide insights into other forces trying to shape healthcare.  The Community Congress benefits by allowing other members to tap into our philosophy, practices, and expertise.  Oftentimes, we are giving a name to something that these organizations, families, and patients are experiencing in their lives.

Call to Action

The Community Congress is participatory – the more we put in, the more we will get out.  As our membership renews in 2026, we want to use all the benefits membership brings.  Our current Membership level includes seats for two people to be part of one working group.  The working groups meet virtually, quarterly. Membership also includes registration to the Annual Meeting, access to the Community Congress portal (very similar to the SPM forums), weekly updates on pertinent issues, and the occasional issue driven workshop.

If you are interested in getting involved with the Everylife Community Congress as a representative of SPM, please reach out to me at kevin@salemoaks.com.

I thank the Society for Participatory Medicine for supporting my transportation and lodging that allowed me to attend the Community Congress Annual Meeting.

The post Everylife Foundation Community Congress Annual Meeting Highlights appeared first on SPM Blog.

What if the most powerful medicine wasn’t a pill, but a team grounded in compassion?

Healthcare today is complex. No single clinician can meet every need of a patient navigating chronic illness, acute crises, or preventive care. That’s why collaboration matters. When teams unite around a patient-centered mission and anchor their work in the principles of Caritas®, care transforms from a checklist into a healing experience.

Collaboration is not only among clinicians, but also between Health Care Providers (HCPs) and patients, forming a partnership where expertise and lived experience meet.

Why Collaboration Is Essential

Collaboration isn’t just about clinicians working well together, it’s about inviting patients into the circle of care. True healing happens when HCPs and patients co-create decisions, aligning treatment with what matters most to the individual. This partnership recognizes that clinical expertise and patient wisdom are equally vital. When the patient’s voice shapes the plan, collaboration becomes more than coordination; it becomes partnership. This shared approach builds trust, strengthens adherence, and transforms care from a transaction into a relationship.

Caritas®: The Heart of Healing Teams

Jean Watson’s Caritas® principles call us to lead with loving-kindness, authentic presence, and respect for the human spirit. When teams embrace these values, they create environments where trust thrives. Caritas® reminds us that every interaction is a “caring moment” – an opportunity to listen deeply, honor culture and context, and co-create solutions that matter to the patient and family.

This approach shifts the question from “What’s the matter?” to “What matters most?” That single shift changes everything.

The Ripple Effect

When collaboration is grounded in Caritas®, the benefits extend beyond clinical metrics. Patients feel safe and heard. Families experience dignity and respect. Clinicians rediscover meaning in their work. These human outcomes – trust, hope, belonging, are not soft measures; they are the foundation of adherence, resilience, and recovery. These outcomes are strongest when patients and HCPs share decisions and trust each other as partners in care.

Imagine a multidisciplinary team managing a patient with diabetes and depression. A Caritas® informed approach ensures the nurse practitioner, physician, social worker, and dietitian don’t just share data – they share presence. They ask, “What matters most to you today?” That question opens space for the patient’s voice, aligning care with life goals rather than isolated lab values.

Why It’s the Best Medicine

Collaboration without compassion can feel transactional. Compassion without collaboration can lack structure. Together, they form the best medicine: a system where science and soul meet. Caritas® provides the ethic; collaboration provides the engine. Both are essential for care that heals.

The best medicine includes the patient as a collaborator. Caritas® reminds us that every caring moment is an opportunity to listen deeply and honor the patient’s story. When clinicians ask, “What matters most to you?” and act on that answer, they create care plans that reflect life goals – not just lab values. This partnership fosters dignity, hope, and belonging, which are as critical to healing as any prescription.

These steps ensure HCPs and patients work as true partners in care, making collaboration intentional and meaningful, not optional.

Practical steps:

• Invite patients and Health Care Providers (HCPs) into care planning conversations as equal partners.
• Use shared decision-making tools, so patients and HCPs align on goals and values.
• Ensure HCPs measure success by experiences of trust and respect, not just clinical outcomes.

Collaboration grounded in Caritas® is not complete until the patient’s voice is heard and honored. That is where science meets soul, and where healing truly begins.

Collaboration Beyond the Team: Partnering with Patients

Start Today

Healthcare leaders can foster this model by:

• Embedding Caritas® principles in team training and daily huddles.
• Designing workflows that prioritize shared decision-making.
• Measuring success not only by outcomes but by experiences of trust and respect.

Caritas® principles guide not only team dynamics but also every interaction between HCPs and patients, ensuring care is co-designed with compassion and respect.

The future of healthcare depends on more than technology or policy. It depends on teams who choose to work together, guided by love and grounded in presence. When we do, we deliver more than treatment, we deliver healing.

The best medicine is delivered when HCPs and patients collaborate as equals, science and soul, expertise and experience, working together for healing.

Caritas® is a registered trademark of the Watson Caring Science Institute

Darlene Cunha, MMHC, BSN, CENP-RN, WCSI, Caritas Coach, CSSBB, is a distinguished healthcare executive with more than four decades of experience in nursing and healthcare leadership. She partners with leaders to integrate Caritas into practice, fostering resilience, ethical leadership, and systems where love and excellence coexist.

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Editor’s Note: Recent SPM articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX Pulse). Eric’s story demonstrates that maintaining a healthy relationship between patient and family caregiver requires persistent intentional effort.  Special thanks to Kevin Freiert for consolidating the Beryl data.

Caregiving is one of the most intimate roles a person can take on. Whether you’re supporting an aging parent, a partner with chronic illness, or a child with special needs, caregiving demands more than just physical effort—it requires emotional presence, patience, and above all, trust.

I remember when I became a family caregiver to my wife through her cancer surgery and treatments.  Even though we had a loving relationship, the ways in which I cared for her still came into question: “Is that what the doctor said to do?” “Are you giving me my meds on time?”  I understood her concern but wondered why her trust in me wasn’t a given.

Trust is the invisible thread that holds the caregiving relationship together. Without it, even the most well-intentioned care can feel hollow or transactional. But with it, caregiving becomes a powerful act of love and connection.

Trust Begins with Vulnerability

At the core of family caregiving is vulnerability. The care receipient often finds themselves relying on others for basic needs—bathing, eating, mobility, medication. This reliance can be uncomfortable, even frightening. It strips away feelings of independence and control.

For the caregiver, vulnerability shows up differently. It’s the emotional toll of watching someone you love struggle. It’s the fear of making a mistake, of not doing enough, of burning out. For me—a first time caregiver–trust was learned slowly, but eventually I understood it.  Trust, then, isn’t just about competence, it’s about emotional safety. It’s saying, “I see you. I’m here. You’re not alone.”

The Daily Rituals That Build Trust

Trust isn’t built in grand gestures but in small, consistent moments. The way I could gently adjust a pillow. The way I remembered my wife’s favorite snacks and routines. The way I would listen without rushing, speaking without judgment, and spoke honestly with the care team, even though it was hard.  Equally important was my ability to express my own feelings.  I felt saying “I’m feeling overwhelmed” or “I need a break” wasn’t a sign of weakness—it was a sign of authenticity. When both parties feel safe to speak their truth, trust deepens.

These daily rituals create a rhythm of reliability. Over time, they become a language of care. The care recipient begins to relax into the relationship, knowing they are seen and respected. The caregiver, too, finds meaning in these moments, recognizing that trust is a two-way street.

Communication Is Key

Open, honest communication is the lifeblood of trust. Family caregivers must learn to ask questions, not just give instructions. “How are you feeling today?” “Would you prefer this or that?” “Is there anything I can do differently?”

These questions empower the person receiving care. They remind them that their voice matters. They also help the caregiver avoid assumptions and stay attuned to changing needs.

Boundaries and Respect

Trust also depends on boundaries. Caregiving can blur the lines between personal and professional, between love and obligation. That’s why it’s essential to establish clear expectations and respect each other’s space.

For example, a family caregiver might need time off to recharge. The person receiving care might need privacy or autonomy in certain areas. Respecting these boundaries shows that the relationship is built on mutual dignity, not just duty.

Navigating Difficult Moments

No caregiving journey is without its challenges. There will be moments of frustration, miscommunication, and emotional fatigue. But these moments don’t have to erode trust—they can strengthen it.

When mistakes happen, own them. Apologize sincerely. Learn and adjust. When emotions run high, take a breath. Step back. Reconnect. These responses show that trust isn’t about perfection—it’s about resilience.

The Ripple Effect of Trust

When trust is present in family caregiving, it creates a ripple effect. The person receiving care feels more confident, more secure, more willing to engage with life. The caregiver feels more fulfilled, more connected, more capable of sustaining their role.

Beyond the immediate relationship, trust in caregiving can influence families, communities, and even healthcare systems. It sets a standard for compassionate care. It reminds us that at the heart of every medical chart, every diagnosis, every treatment plan, there is a human being who needs to feel safe.

Finally, family caregiving is not just a task—it’s a relationship. And like any relationship, it thrives on trust. Building that trust takes time, intention, and heart. But the rewards are profound: deeper connection, greater healing, and a shared sense of purpose.

Whether you’re a seasoned caregiver or just beginning your journey, remember this—every act of care is an opportunity to build trust. And in doing so, you’re not just helping someone live—you’re helping them feel truly alive.

What The Data Say

In the PX Pulse survey, several questions revealed insights on the perspectives of family caregivers.

• 89% of caregivers care for a family member, including 21% for a spouse or partner
• People tend to be caregivers for extended periods of time
• Most caregivers have difficulty navigating the healthcare
• Caregivers’ primary task is providing emotional support, followed by navigating care
• Caregivers turn to other family members for help more than any other resource
• Caregivers are most challenged by balancing caregiving responsibilities and personal commitments.

The data from SPM questions show that fewer than half the respondents felt that their providers involved their loved ones in ways that they wanted. Some statistically significant differences:

• Patients with life partners (42%) compared to single patients (33%).
• Annual incomes: below $50,000 (32%) compared to more than $100,000 (42%).
• Hispanic respondents (29%) compared to white/non-Hispanic (43%)

Link to the February 2025 PX Pulse  https://theberylinstitute.org/product/px-pul

Eric Bersh is board secretary for the Society for Participatory Medicine.

The post Collaboration is the Best Medicine: It’s the Heart of Caregiving appeared first on SPM Blog.

Editor’s Note: Our recent articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine (SPM) suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX Pulse).  This installment takes a deeper dive into one part of the data and one person’s experience taking the actions to collaborate with their providers.  We thank Vickie Wilkerson for sharing her story that models how collaborative patients can positively affect their healthcare.

What the data say

In the PX Pulse, nearly 80% of respondents believe that they should have equal or greater control over their healthcare decisions as their doctors.  Roughly half of all respondents reported that they almost always come prepared to their visits (54%), speak honestly (53%), ask questions (52%), and share concerns (49%).  Consistent with this, 51% of respondents almost always considered themselves an active member of the care team.

Digging a little deeper, the results also show that those who prefer equal or greater control were also more likely to take collaborative action. Among those who preferred equal control, 58% reported they almost always spoke honestly to their care team, even when it was difficult to do so. And 60% of those who preferred a greater share of the control did so.  Just 42% of respondents who prefer that doctors have more control reported speaking honestly almost always.    The results for arriving prepared, asking questions, and sharing concerns were similar.

Only 34% of respondents who deferred more control to their doctors considered themselves an active part of the care team, compared to 53% for those who prefer shared control and 58% of those who prefer more control.

Vickie’s Story

Living with an auto-immune disease can bring many challenges. Most of those conditions can lead to having other conditions. These are called comorbidities. For instance, in my case, I have psoriasis. I have had it nearly 20 years now. Sometimes I feel like I live in a doctor’s office because of all the health conditions that I live with. On top of having psoriasis I now have high blood pressure, high cholesterol, anxiety, and psoriatic arthritis. This means I see a primary care doctor, a rheumatologist, and a dermatologist routinely. Some people are lucky that if they see multiple doctors those doctors will communicate with each other concerning treatment so that the patient is getting the best care. In my case, none of my doctors communicate with each other.

I have to speak for others

Because my doctors do not communicate with each other this means I have to speak up about the care I receive from others. It also means I must be vocal in my own health care. For the longest time I didn’t do that. From the minute of your diagnosis, it is not something you are taught to do – speak up. I wish I had.  I believe my health has suffered because I didn’t speak up. My doctor would say whatever during the visit and that would be it. I didn’t tell him/her what the other doctors said, nor did I say what I felt was right or wrong. Well, I can tell you that that is not me anymore. I am very vocal when it comes to my health care.

Learning to speak up

We have so much information now when it comes to dealing with our health. Computers are handy for looking into whatever it is you are dealing with. However, 20 years ago, there was not a lot of information about psoriasis. It wasn’t until I got involved in advocacy that I learned that I could have a say in my health care. When I started my advocacy journey, I was shy and timid. It didn’t take long before I found my voice. I learned if you have a doctor that doesn’t listen or doesn’t think what you are saying means anything then it is time to find a new doctor. It is because of this reason I have had multiple doctors over the years.

Finding the right doctors

It is your health. No one knows your body and what you are dealing with better than you. That means you have an obligation to yourself to take control of your health care. You will find some doctors that do not like it when you start speaking up about your treatment. On the other hand, you will find doctors that now believe that if you speak up, the two of you can begin to find options that work best for your care. Those are the doctors you want to have in your corner. Someone who will listen to you, your concerns and not dismiss what you are saying.

Better health care

My doctor’s visits now are so much better. I feel like I am in control of my health. No matter which doctors I am seeing we discuss what the other doctors say along with how we are going to proceed in my treatment. That way I am getting the best care possible. You must be your own advocate when it comes to your health. Speak up when you feel something is not to your liking. If it is to your liking speak up about that too. Remember it is your health. You have the right to speak up about what you feel is the right direction in your own health treatment.

The post Collaboration is the Best Medicine: How to Partner with Your Doctor for Better Care appeared first on SPM Blog.

Healthcare works best when patients and providers work together as true partners. This fundamental principle of participatory medicine—where patients are active collaborators rather than passive recipients of care—has never been more important. Yet recent survey findings reveal significant gaps in how this collaboration plays out across different patient populations, highlighting both progress made and work still to be done.

The Current State of Patient-Provider Collaboration

A survey of over 1,000 Americans reveals fascinating insights into how patients engage with their healthcare teams and where disparities persist. The findings paint a nuanced picture of collaboration that varies significantly based on gender, income, marital status, and ethnicity.^[1]

Overall Room for Improvement

The survey surfaced a few serious concerns.  For example, just 1 in 2 patients felt included in their care team.  Furthermore, only 1 in 5 were treated as experts in their own health.  And fewer than 2 in 3 thought clinicians always spoke honestly. These results indicate that the uptake of participatory medicine is nowhere near complete and that there is more work to be done.  We will not understand the trajectory of collaborative healthcare until we collect additional data over time.

Gender Dynamics in Healthcare

While men and women generally rate their healthcare teams similarly—with providers using understandable language and speaking honestly at comparable rates—women emerge as notably stronger self-advocates. They’re more likely to consistently ask questions to understand their care, advocate for themselves, and actively seek information about their treatment. Women also demonstrate greater willingness to reach out to others for help managing their health, suggesting a more collaborative approach to care coordination.

The Income Divide

Perhaps most concerning are the challenges faced by patients earning under $50,000 annually. This population reports significant barriers including difficulty understanding healthcare language, feeling that loved ones aren’t adequately involved in their

care, and not being treated as experts in their own health. They’re also less likely to come prepared to appointments, speak openly with providers, or see themselves as active care team members. This disparity represents a critical opportunity for healthcare systems to enhance engagement among less affluent patients.

Partnership Status Matters

Marital status creates another layer of healthcare disparity. Partnered individuals are significantly more engaged with healthcare teams and report better experiences overall. Single patients face a double challenge—not only are they less likely to have engaged with healthcare providers in the past year, but when they do, they report that providers are less likely to use understandable language, respect their preferences, or involve loved ones as desired.

Racial and Ethnic Disparities

The data reveals troubling disparities across racial and ethnic lines. Hispanic patients visit healthcare providers less frequently and report lower satisfaction across nearly all metrics of healthcare team performance. They’re less likely to report that providers use understandable language or communicate honestly. Conversely, Black/African American patients are most likely to report that providers encourage them to learn about their health, suggesting some providers may be successfully fostering curiosity and engagement with this population.

Control Preferences and Participation

Interestingly, patients who prefer doctors to maintain more control over healthcare decisions report that providers speak more honestly with them. However, this same group feels less respected in terms of their preferences and is less likely to be treated as health experts. They also show lower engagement in active participation behaviors like preparing for appointments and seeking care information.

Moving Toward True Collaborative Healthcare

These findings underscore that collaboration truly is the best medicine—but we’re not there yet across all populations. The disparities revealed point to specific areas where healthcare providers can enhance patient participation and build stronger partnerships.

In addition, the overall findings for the actions and behaviors of both patients and providers leave a lot of room for growth.  One might assume that the natural goal would be 100% of respondents indicating that they almost always do or experience many of these actions and behaviors. For example, all people should feel respected by their healthcare providers, right?

In reality, we need to do much more research to define the ideal level of healthcare collaboration, or more correctly, the ideal mix of these behaviors and actions.

The Path Forward

Effective collaboration requires intentional effort from both patients and providers. For patients, this means developing skills in sharing information responsibly, listening actively, showing respect for provider expertise, maintaining curiosity about their health, and becoming effective team builders. For providers, it means recognizing and addressing the unique barriers faced by different patient populations.

The solution lies in fostering environments where all patients—regardless of income, marital status, or ethnicity—feel empowered to participate actively in their care. This requires targeted approaches to engage less affluent, single, and Hispanic patient populations who currently face the greatest barriers to full participation.

This survey was a first step in learning how to quantify the level and quality of participatory medicine across the nation. The results demonstrate that a robust collaborative healthcare action measurement platform will provide actionable insights for patients, providers, and healthcare systems.

As we work toward more equitable healthcare partnerships, the goal remains clear: creating collaborative relationships where patients and providers work together as equal partners, with mutual respect, open communication, and shared responsibility for health outcomes. When we achieve this vision, collaboration truly becomes the best medicine for everyone.

Written with assistance from ChatGPT and Claude AI. Image via Leonardo.ai (nano banana). Psychotherapy icon created by Iconjam – Flaticon

1. ^[1]Additional Statistical Analysis performed by Tina Bronkhurst.↩

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Emory Ford

My primary care physician motivated me to share my story, which is perhaps best described as an unfinished journey.  What started to be a typical runner’s problem morphed into dealing with limited personal mobility with neuropathic pain and loss of sensation.

I was unprepared for the challenges this journey presented.  The loss of mobility has been extremely frustrating.  The ambiguity in finding the root cause of the problem(s) is and has been less concerning than dealing with the loss of mobility.  I am not sure how one could prepare for such a journey.

I am 85 years old, and enjoy being physically active and mobile, including running.  Science is both a vocation and an avocation for me. As an active scientist for more than 50 years, I have the expectation of being able to understand problems and predict outcomes.  I appreciate that understanding a problem takes time and that more than one outcome is possible.

Four years or so ago, I experienced knee pain and was advised to see an orthopedist.  After undergoing an MRI and x-rays, I was advised to reduce my running and supplement it with biking.

While I continued to run, I noticed emerging problems with my gait and occasional balance problems. Running became no longer possible or fun.  A course of PT was recommended, which I completed.

Because the gait issues continued, I was referred to a neuromuscular neurologist who recommended the use of a type of brace called an ankle-foot orthosis (AFO) to mitigate balance problems.  A recommendation was also made to see a podiatrist to ensure there were no foot problems. I had an exam and x-rays that ruled out foot problems.

As my problem progressed, running and biking were no longer possible, but the AFO enabled me to remain mobile and active. Walking on uneven surfaces became increasingly difficult, but was possible with a cane or walking sticks.

Balance and gait problems continued.  Electromyography (EMG) tests revealed the loss of nerve conduction in both legs.  This led to surgical decompression of the nerves of both legs, near the knees, followed by physical therapy starting with a walker and then with a cane.

Since nerve growth is slow, any improvement was expected to be slow. After 6 months, a second set of EMG tests revealed no improvement in nerve conduction and no improvement in balance or gait.

My primary care physician recommended additional follow-up with a neuromuscular neurologist. A comprehensive set of blood tests was ordered.  Despite the surgery, repeat EMG-confirmed nerve conduction problems in both legs and revealed similar issues in my upper body, which came as a big surprise.

The blood screening tests suggested an autoimmune condition causing demyelination of the nerves.  Follow-up with a hematologist confirmed this after an additional set of blood tests.  Tests indicated a rare autoimmune condition, reported to be 2-3 in a million.

The hematologist recommended a Rituximab infusion to control the autoimmune disease. Rituximab is a monoclonal antibody that modulates the immune system. It is used to treat many autoimmune diseases and some cancers.  The hope is that it would prevent further disease progression and possibly restore better balance and gait.

My problems with balance and mobility had increased with time, but I was able to manage and mitigate some of those problems. However, when the additional EMGs revealed unexpected deterioration of nerve function in both of my arms, I was both surprised and disturbed at the prospect of losing both mobility (impacting my active lifestyle) and manual dexterity (impacting my basket weaving).  It recalled for me a memory of seeing my grandfather, a stroke victim, who lost all mobility and dexterity, including loss of speech.  There was little my grandfather could do.

I decided that the best course of action for me was to accept the recommendation of a suggested infusion in the hope of arresting further nerve deterioration.  After all, the risks of the medication were minimal (other than the cost to Medicare) and the potential benefits were large. However, I was mindful of the possibility of further loss of mobility and dexterity.

Hoping for the best but preparing for the worst, I planned to continue being as active as possible, but also to investigate new activities that demand less mobility and dexterity.

The first infusion was completed.  At this writing, I am waiting to see the long-term results, both in blood chemistry and function.  At this point, my mobility has stabilized, but a cane is required; so far, basket weaving is still possible.

During this personal “saga” I have had significant contact with a variety of caregivers and providers.  My hospital, which provides most of my care, has a patient portal through which I can see my test results in a timely way.  I find that helpful in reducing uncertainty and anxiety.

However, the online data doesn’t put things in context to paint the larger picture.  I suspect many would not find the data helpful.  As a scientist, data analysis has been a part of my life, but understanding medical data is not easy. I have support from family members with a medical background, which helps me understand my medical situation.

I think many people can understand the idea of the probability of success of a procedure and can deal with it.  Although I encountered some providers who were initially reluctant to provide an estimate of the probability of success, when pressed, all my providers did provide estimates and were able to discuss the downsides of treatment.

I have written this to share my four-year experience with a medical problem that produced frustration, uncertainty, and ambiguity, for both the care receiver (me) and care providers. I avoided many of the medical details because I think the story of struggling with a problem may be just as important as all the medical details.

This experience holds a certain fascination for me.  As a scientist, I found myself with a difficult-to-diagnose medical problem with an uncertain treatment. It’s like being a guinea pig, a personal body experiment.  I owe thanks to my providers for their patience with my questions and my insistence on numbers.

In addition to support from my professional medical caregivers I am fortunate to have the support of my family, especially from my wife. She has been patient dealing with my decreased mobility.  During this saga, I had unexpected surgery for a necrotic Meckel’s diverticulum. She patiently gave me daily heparin injections at home after surgery, while supporting me while I was hobbling around with a walker, recovering from both Meckel’s surgery and from the nerve surgery on my leg.  Our daughter is a physician, and she provided support for both me and my wife.  I am thankful for family support; I cannot imagine making it without that support.

My experience suggests that dealing with an unusual and infrequently encountered medical situation is challenging for both the patient and their healthcare professionals. Mutual participation and discussion with my clinicians has been key to helping me meet the challenges.

The post Dealing with Medical Uncertainty, Ambiguity, and Frustration appeared first on SPM Blog.

Kevin Freiert

Daniel Halpren-Ruder, MD

Editor’s Note: Kevin Freiert and Dan Halpren-Ruder, MD are part of a group working to launch an exciting new SPM inititative, described here.

The Promise

Participatory medicine promises to enhance quality while potentially decreasing costs. By actively involving patients in their care, healthcare providers can achieve better adherence to treatment plans, reduced hospitalizations, and improved health outcomes, all of which are crucial elements in a value-based reimbursement landscape. Studies have shown that engaging patients actively correlates with higher quality care, reinforcing the argument that collaborative practices are not only beneficial for patients but also necessary for sustainable healthcare systems. In the value-based healthcare ecosystem of the near future, success will come when the healthcare consumer is seen as an asset powering efficiency and healthcare consumer-centered outcomes.

Collaborative healthcare work to date

In recent years, the concept of participatory or collaborative healthcare has gained prominence, heralding a shift from traditional, paternalistic models of care to more inclusive approaches that engage patients as active participants in their treatment journeys. There are six significant paradigms within this sphere.

1. Patient Activation emphasizes the empowerment of individuals to take ownership of their health, fostering self-efficacy and encouraging proactive engagement with healthcare systems.
2. Participatory Medicine extends the principles of patient activation by promoting the idea that patients playing an integral role in their own care alongside healthcare professionals will lead to improved outcomes through shared responsibility and transparency.
3. Co-production represents a broader framework for patients and healthcare providers to jointly contribute to the design and delivery of health services.
4. P4 Medicine (Predictive, Preventive, Personalized, and Participatory) harnesses advancements in technology and big data, emphasizes personalized treatments based on predictive analytics, highlights preventive care, and enhances participatory elements.
5. Collaborative Medicine seeks to enhance coordination among various healthcare professionals, and between patients and providers, to promote holistic care and facilitate better health outcomes.
6. Shared Medical Decision-Making underscores the importance of collaborative conversations between patients and providers, which directly contributes to better adherence and satisfaction.

Each of these paradigms illustrates a different facet of collaborative healthcare, yet they converge on a common principle: the recognition that patient engagement and partnership are essential to achieving optimal health outcomes.

The science of collaborative healthcare is underdeveloped

In a  paper in the January 2020 issue of the Journal of Participatory Medicine, VJ Palmer makes the case that “participation in the ‘design and implementation of new policies, systems and services as well as patient care and clinical decision-making’ is now so prolific that it is time to genuinely consider the need for a science of participation in health care. She argues that there are three gaps that must be filled to allow the examination of the phenomenon of participation:

• A Unifying language
• Explanatory theories and models
• An “evidence base of impact and outcome using the theories, models, and measures developed by the participatory fields.”

She explains, “…there is an expectation that participation from patients, carers/families, and service users increases patient-centered outcomes, improves professional morale, and increases health and well-being; however, the measurement of this has been inconsistent and almost absent.”

In a 2014 systematic review of Influence of the Patient-Clinician Relationship on Healthcare Outcomes, Kelley et. al. found a small but statistically significant effect on health care outcomes across 13 randomized control studies of interventions of the providers’ skills and behaviors.  While the results of the analysis are promising, they are somewhat underwhelming. The review suggests several improvements to such studies.

There are many studies of the impact of various forms of collaborative healthcare in various diseases. This partial mosaic of studies and inferences suggests that there is great potential for participatory medicine to impact health outcomes, costs, provider satisfaction, patient satisfaction, and health equity. There is an opportunity to unify these various efforts and generate broad evidence that such collaboration leads to more effective healthcare.

We need a measure

“Measurement involves assigning a metric according to a reality with respect to the desired information…. Evaluation involves comparing the measurement obtained with a standard measure in the context of which the measurement is carried out, and arriving at a judgement based on this comparison.” Before we can evaluate impact, we need to figure out how to measure the degree and quality of collaboration.

The missing piece in the mosaic of evidence of the impact of participatory medicine is a mechanism to rigorously and consistently measure the actions, behaviors, and perceptions of patients (consumers), providers, and health systems over time.

The Society for Participatory Medicine (SPM) is working to develop a Collaborative Healthcare Action Measurement Platform (CHAMP) to close this gap.

The objectives of the CHAMP initiative are:

• To quantify the level of collaborative healthcare activity and behaviors among patients, family caregivers, their providers, and healthcare systems in a consistent and rigorous manner.
• To provide a basis for comparing the level of collaborative healthcare activity across time, geography, systems, practices, medical specialties, populations, and other dimensions.
• To provide a basis for setting goals towards broadly achieving the vision of widespread uptake of collaborative healthcare activity.
• To accumulate a valid dataset that can be used to investigate the relationships between collaborative healthcare activity and other measures.
• To assess changes in activities and behaviors over time by repeating the survey at regular intervals.

We are very interested in your reaction to this initiative.  And we need your help to make it a success. If you would like to get involved or support this work, please contact us at info@participatorymedicine.org

The post Collaboration is the Best Medicine: The Time for Participatory Medicine is Now appeared first on SPM Blog.

We don’t regularly post obituaries on the e-Patients Blog. But sometimes we lose someone of great moment to the SPM and the e-patient community. Nancy Finn was one such person.

Nancy Finn was a beacon of inspiration and advocacy. Recently, we faced the profound loss of Nancy, who passed away after a brief illness. A courageous two-time breast cancer survivor, Nancy also faced the challenges of a chronic health condition. However, she never let her struggles define her. Instead, she utilized her experiences as an engaged and empowered e-patient to help others navigate their health journeys. 

Nancy was a long-time member of the board of overseers and served as a patient advocate at Beth Israel Deaconess Medical Center and on the quality board at Mount Auburn Hospital in Cambridge, MA. She also served on the consumer health council and patient engagement workgroup of Massachusetts Health Quality Partners.

Nancy’s professional background was in writing, publishing, and marketing, and she taught journalism and communications at Boston University. She applied her skills to writing a blog and publishing several books, first advocating for greater use of technology in medical practice and then illustrating how digital technologies can be powerful tools for patients. The revised second edition of her book, e-Patients Live Longer: The Complete Guide to Managing Health Care Using Technology, was published in 2023. I was privileged to contribute the foreword for both editions.

Her knowledge and insights were not confined to her writings; Nancy shared her expertise through presentations and discussions at international forums at the Global Alliance for Women’s Health and the Global Alliance for Health Promotion, affiliated with the United Nations Economic and Social Council and the World Health Organization.

Her role as an early member of the Society for Participatory Medicine (SPM) exemplified her commitment to patient engagement. As a prolific contributor to our blog, her well-researched essays on topics such as chronic illness, healthcare costs, and personal patient experiences informed and inspired many. As a result of her energy and engagement, she joined the board of directors and served as secretary for many years. She was a valued member of the board, and she felt passionately about the SPM’s mission. Even after retiring from the board, her dedication remained steadfast; she announced that proceeds from her recent book would be donated to SPM, a testament to her commitment to the cause.

I was fortunate to collaborate with Nancy on a paper recently published in the Journal of Participatory Medicine, titled “From Internet to AI Bots: Symbiotic Evolutions of Digital Technologies and e-Patients.” While she knew of its acceptance, it is heartbreaking that she did not live to see it published.

Nancy Finn will be deeply missed by all of us who had the privilege of knowing her. Her warmth, passion for advocacy, and unwavering belief in empowering patients have left a lasting legacy. As we move forward, let us honor her memory by continuing to champion the participatory medicine movement.

The post In Memory of Nancy Finn: e-Patient, Advocate, Author, SPM Supporter appeared first on SPM Blog.

Our Society was founded by 11 friends and followers of “Doc Tom” Ferguson, who died in 2006 of multiple myeloma. (If you don’t know his extraordinary vision, see our Doc Tom page, and perhaps our Founders page. I continue to cite him in my speeches, 19 years later – AI is blowing the roof off patients’ power.) Among those founders are Joe & Terry Graedon, founders of People’s Pharmacy, one of the patient empowerment sites Tom pointed to in the 1990s. Earlier this month Joe penned this post on their site.

Multiple Myeloma Meets Its Match with CAR-T – Can Cancer Patients Afford It?

By Joe Graedon, People’s Pharmacy and SPM co-founder

Multiple myeloma is personal for me. That’s because my best friend, Dr. Tom Ferguson, died from this blood cancer on April 14, 2006. Every year over 35,000 people are diagnosed with multiple myeloma and more than 12,000 die.  Tom was the father of the medical self-care movement.

To quote Wikipedia, he

“…was an American medical doctor, educator, and author. He was an early advocate for patient empowerment, urging patients to educate themselves, to assume control of their own health care, and to use the Internet as a way of accomplishing those goals.”

Tom and I authored two books together and I miss him every day. One of the books was The Aspirin Handbook, (Bantam Books, 1993) and the other was a novel titled No Deadly Drug (Pocket Books, 1992). The photo at the top of this article is of Doc Tom. It sits on my computer so I can see his smile every day.

Tom got the very best treatment available at that time. Tom lived a lot longer than his doctors predicted. But like so many before him, his body ultimately surrendered to both the cancer and the aggressive treatment.

Now, though, there is a new treatment for multiple myeloma and it might have saved his life if it had been available then.

CAR-T vs. Multiple Myeloma:

The Food and Drug Administration approved a powerful new approach for the treatment of multiple myeloma in 2022. It was called ciltacabtagene autoleucel or cilta-cel for short. The treatment was sold under the brand name Carvykti. It was licensed by Janssen, a subsidiary of Johnson & Johnson and developed by Legend Biotech, a China-focused drug company that is now based in New Jersey.

This CAR-T immunotherapy was tested in both China and the US. The initial results were promising. In a trial of 97 patients, 83 percent had a complete response. These patients had all tried at least three other therapies before Carvykti. After 22 months, more than half of these individuals were still alive and their disease had not progressed. That was impressive at the time. Now, there is even better news.

The Latest Update on Carvykti Against Multiple Myeloma:

On June 3, 2025 there was an update on the Carvykti clinical trial (Journal of Clinical Oncology). The title is key:

“Long-Term (≥5-Year) Remission and Survival After Treatment With Ciltacabtagene Autoleucel in CARTITUDE-1 Patients With Relapsed/Refractory Multiple Myeloma”

As mentioned above, there were 97 multiple myeloma patients who had stopped responding to other available therapies. Many of these patients had few, if any, options left except hospice.

The investigators offered these desperate people a kind of immunotherapy called CAR-T. That abbreviation stands for Chimeric Antigen Receptor T-Cell therapy, a complicated procedure in which the patient’s white blood cells are removed and engineered to recruit T-cells against the cancer. They are then reinfused to fight the malignant cells.

Until now, CAR-T approaches have mostly been developed for other blood cancers, such as leukemia or lymphoma. The new therapy worked surprisingly well for multiple myeloma.

One-third of the patients who got the therapy five years ago are still cancer-free. The researchers note:

“To our knowledge, our data provide the first evidence that cilta-cel is potentially curative in patients with RRMM.” [RRMM stands for relapsed or refractory multiple myeloma.]

Oncologists are excited about the unprecedented results reported in the Journal of Clinical Oncology, June 3, 2025).

Dr. Norman Sharpless told the New York Times (June 3, 2025):

“’In my 30 years in oncology, we haven’t talked about curing myeloma,’ said Dr. Norman Sharpless, a former director of the National Cancer Institute who is now a professor of cancer policy and innovation at the University of North Carolina School of Medicine. ‘This is the first time we are really talking seriously about cure in one of the worst malignancies imaginable.’

“And for those like the patients in the new study who are living at least five years — so far — without disease, the outcome ‘really is eye-popping,’ Dr. Sharpless said.”

“’That’s getting to a point where you wonder if it will ever come back,’ he added.”

If My Friend Tom Had Received Carvykti…

When Tom’s cancer returned, he had a bone marrow transplant. I remember trying to protect him from infection because his immune system had been decimated by heavy-duty chemotherapy.  The photo below is Tom at the University of Arkansas Medical Center where he had recently undergone his bone marrow transplant. You can see the ports that were implanted. He recovered and did well for quite a while. Tom lived a lot longer than most multiple myeloma patients at that time. Carvykti might have changed the outcome.

The Downsides of CAR-T for Multiple Myeloma:

There are several challenges with treatments like CAR-T. In many cases, insurance companies and guideline committees reserve these approaches as a last resort. That’s partly because they come with serious side effects. Carvykti can trigger fever, infections, fatigue, headache, diarrhea, muscle pain, nausea, low blood pressure and neurological symptoms. There is also the price tag! More about that momentarily.

What if Carvykti was tried earlier in the treatment process?

The New York Times offers this professional perspective:

“Dr. Kenneth Anderson, a myeloma expert at Dana-Farber Cancer Institute who was not involved with the study, said that if the treatment is used as a first-line treatment, ‘cure is now our realistic expectation.’”

In addition to adverse reactions, the biggest drawback of  this CAR-T treatment is the price tag. According to the NYT, the list price for Carvykti is over $555,000. But that may not include many additional costs including post-treatment expenses. Some estimate that the total cost of CART-T treatments could exceed $1 million if patients experience serious adverse reactions that require hospitalizations.

Many insurance companies balk at paying over half a million dollars for this kind of treatment, unless all other options have been exhausted. There may also be a co-pay depending upon coverage.

What this means is that many patients will be on death’s doorstep before they can get access. As mentioned, some investigators hope that if the treatment were administered earlier in the disease, it might prove to be a cure for more patients.

Carvykti Is an Orphan Drug:

Like many of the newest cancer drugs, Carvykti has received Orphan Drug Designation from the FDA. When this category was first established, it was for “significant drugs of limited commercial value.”

The expectation was that pharmaceutical companies would not charge excessively for medicines that would be taken by relatively few people. Few, of course, is a relative term. It could be thousands of cancer patients. Congress gave drug companies incentives to develop orphan drugs on the grounds that they probably would not break even or make much money.

Drug companies quickly saw an opportunity, though. Orphan drugs are now huge money makers for the pharmaceutical industry. Some treatments for rare genetic conditions can cost millions. Many of the latest cancer treatments are also incredibly expensive. How many people will be able to afford extraordinary advances from breakthroughs like Carvykti?

Please do not get me started on the high cost of cancer drugs! Should you wish to read my thoughts on this topic, here is a link.

The post A cure for what killed Doc Tom! Can people afford it? appeared first on SPM Blog.

Editor’s Note: This is the second part of Josh Rubin’s post.  The first was published on May 23, 2025

Building Upon a Powerful Foundation of Patient Empowerment

In part 1 of this post I paraphrased Dr. Casey Means (referencing Robert F. Kennedy, Jr.), noting that without delving into the heated political debate vis-a-vis whether or not current administration health policies are actually mobilizing us toward achieving such laudable ends, three stated overarching objectives of the Make America Healthy Again (MAHA) movement are:

1. To reverse the trend of America’s chronic disease epidemic so that we can show up to our nation’s 250th birthday on July 4, 2026 stronger than ever;
2. To generate gold-standard, uncompromised, evidence-based research to inform our health guidelines;
3. To eradicate corruption from our health agencies.

MAHA proposed that a disruptively transformative paradigm for health predating it by at least seventeen years, known as the Learning Health Systems (LHSs) vision, encapsulates three synergistic collaborative efforts that, interestingly, map almost 1:1 as enablers of the three respective articulated MAHA overarching objectives, encompassing:

1. A disruptive vision of patient empowerment anchored in LEARNING;
2. A novel transdisciplinary science of learning systems for transforming HEALTH;
3. A grassroots movement to combat abuses of power in anti-learning SYSTEMS.

Patient empowerment driven by LHSs is an absolutely essential starting point. Indeed, reversing key indicators of chronic disease by Independence Day, 2026 requires knowing what works, but such knowledge alone will not in itself drive change (and ultimately better health for all). Rather, the knowledge must be accessible and actionable, mobilized to patients (and to all people making decisions affecting health) at the right time and in the optimally tailored form, so as to empower these individuals to exercise their autonomy to make such better informed health decisions (and to actually be able to take actions driven by such decisions). Coupling such an approach to patient empowerment anchored in systemic learning with a novel transdisciplinary science to generate uncompromised evidence-based research and an incipient movement to combat corruption underpinned by principles of LHSs, engenders the potential to ultimately unleash the power of multiple and diverse stakeholders to separately and collaboratively transform human health.

A Novel Transdisciplinary Science to Generate Uncompromised Evidence-Based Research

Generating gold-standard uncompromised evidence is at the core of the transdisciplinary science and corresponding sociotechnical infrastructure underpinning LHSs. Indeed, of the four overarching system level requirements identified over a decade ago to advance scientific research underpinning LHSs, it is no coincidence that the very first relates to myriad aspects of measuring, engendering, and continuously improving both trustworthiness and trust. Precisely defined “Scientific Integrity” has been recognized as one of the sacrosanct consensus Core Values of LHSs, and development of methodologies to learn valid lessons from real-world evidence has been integral to such advancement.

Combating Corruption Utilizing Learning Health Systems Principles

In the face of leadership scandals that have tarnished academic medicine, including issues of scientific fraud featured on Retraction Watch, or Armies of Enablers rendering possible surreptitious abuses of patients and students by those wielding power in academia, incipient research and corresponding advocacy has emerged to understand and combat such abuses of power from a system sciences perspective. A hallmark of all these monsters surreptitiously wearing different masks is their “anti-learning systems” character; they explicitly violate (but ostensibly champion) Core Values and Shared Commitments that embody LHSs. Hence, LHSs engender frameworks and sociotechnical infrastructures promising to combat corruption.

Synergistic Fusion

The separate objectives aimed at making America healthier and stronger than we have ever been by our 250th birthday, can be underpinned by LHSs. Indeed, LHSs engender the potential to democratize health in ways previously unimaginable. The vision embodied by the synergistic fusion of the related efforts discussed, promises to empower every American to indeed, ”all work together to give the gift of health to our children and our nation.”

Joshua C. Rubin, JD, MBA, MPH, MPP is a Clinical Assistant Professor of Learning Health Sciences at the University of Michigan Medical School Department of Learning Health Sciences. He is also the Executive Director and Vice President of the Board of Directors of the Joseph H. Kanter Family Foundation. On a pro bono basis, Rubin serves as Founding President and CEO of the Learning Health Community. He is a Lifetime Member of the Society for Participatory Medicine. He can be reach on X @JoshCRubin

The post Learning Health Systems Empower Every American to Actually Make America Healthy Again Together, Part 2 appeared first on SPM Blog.

Editor’s Note:

This post (in two parts) builds upon email correspondence the author sent to Robert F. Kennedy, Jr. and key members of his Make America Health Again (MAHA) team beginning in November 2024. It aims to illuminate alignment between three principles (and related applications) of person-centered Learning Health Systems (LHSs) and the three stated overarching goals of MAHA. While there can and should be vigorous debate whether or not policies and actions of the new administration will actually achieve these stated goals, the author’s purpose is to illuminate the ways LHSs (and especially patient empowering aspects of LHSs) can underpin and accelerate our progress toward achieving goals for a healthier America.

The Rule of Three

The rule of three makes storytelling more captivating, marketing more compelling, and comedy more humorous. Three represents the smallest number that illuminates an emerging pattern. Perhaps that is why, in January 2007, Steve Jobs kicked off one of his most memorable product pitches by promising to introduce three brand new Apple products: a touchscreen iPod, a breakthrough Internet communications device, and a phone. Disruptive transformation innovation happened when these three products were synergistically fused into one powerful device, the iPhone.

In November 2024, Dr. Casey Means appeared on HBO’s Real Time with Bill Maher. Describing the Make America Healthy Again (MAHA) movement, Dr. Means articulated three overarching tasks then President-elect Donald Trump would charge Robert F. Kennedy, Jr. to make happen as his choice to lead the United States Department of Health and Human Services (HHS). To paraphrase Dr. Means, these MAHA objectives would be:

1. To reverse the trend of America’s chronic disease epidemic so that we can show up to our nation’s 250th birthday on July 4, 2026 stronger than ever;
2. To generate gold-standard, uncompromised, evidence-based research to inform our health guidelines;
3. To eradicate corruption from our health agencies.

A disruptively transformative vision for health predating MAHA by at least seventeen years (an important number in its own right, as it represents the mean lethal lag in evidence translation from bench to bedside), encapsulates three synergistic collaborative efforts that, interestingly, map almost 1:1 as enablers of the three respective articulated MAHA overarching objectives, encompassing:

1. A disruptive vision of patient empowerment anchored in LEARNING;
2. A novel transdisciplinary science of learning systems for transforming HEALTH;
3. A grassroots movement to combat abuses of power in anti-learning SYSTEMS.

Learning to Empower Individuals to Reverse Chronic Disease Trends

These initiatives readily fuse into one disruptive concept called the Learning Health System (LHS). In 2007, the same year that Steve Jobs released Apple’s iPhone, the National Academy of Medicine (then, Institute of Medicine), released a workshop report about the “Learning Healthcare System” vision (and subsequently, “Learning Health Systems”). The NAM described this vision as, “one in which progress in science, informatics, and care culture align to generate new knowledge as an ongoing, natural by-product of the care experience, and seamlessly refine and deliver best practices for continuous improvement in health and health care.” Put another way, LHSs capture real-world evidence related to health, harness the power of analytics to learn and validate trustworthy knowledge, and mobilize such actionable knowledge into the hands of patients and clinicians (and all health stakeholders) to engender virtuous cycles of continuous improvement and ultimately better health.

A decade earlier, a parallel democratizing thread helped weave it together. Since the 1990s, Joseph Kanter, a frustrated patient, advocated to ensure that, while preserving privacy and putting the patient at the center, our health system would learn from the real-world health experiences of every patient, for every patient. Kanter mobilized a movement to ensure that one day every decision affecting health is informed by actionable knowledge of “what works best”. Many years before Robert F. Kennedy, Jr. proclaimed that “Ultimately, the only thing that will save our country is if we choose to love our kids more than we hate each other,” Kanter urged stakeholders at every point on the health compass, “Let’s all work together to give the gift of health to our children and our nation.”

In parallel, myriad patient advocates championed their rights to access and use their data, to share their stories (including a movement started by an artist for patients to wear business jackets featuring paintings depicting their personal health journeys), and to have access to trustworthy knowledge to underpin informed decisions. So-called e-patients fought valiantly to realize LHSs by and for all health stakeholders, recognizing that in dollars and in lives lost, we could not afford a health system marked by knowledge hoarding (and information blocking) and domination by “elites”.

To reverse the key indicators of chronic disease, merely knowing what works is necessary but not sufficient. The empowerment of patients and all health stakeholders with actionable knowledge to make better informed choices affecting health, coupled with the autonomy to freely make such choices, will be an unstoppable force for health. When fused with a novel transdisciplinary science to generate uncompromised evidence-based research, as well as an emerging collaborative approach to combating corruption utilizing LHSs principles (see Part 2 of this post), together these synergistic foundational elements hold the promise of empowering every American to actually Make America Healthy Again together.

Joshua C. Rubin, JD, MBA, MPH, MPP is a Clinical Assistant Professor of Learning Health Sciences at the University of Michigan Medical School Department of Learning Health Sciences. He is also the Executive Director and Vice President of the Board of Directors of the Joseph H. Kanter Family Foundation. On a pro bono basis, Rubin serves as Founding President and CEO of the Learning Health Community. He is a Lifetime Member of the Society for Participatory Medicine. He can be reached on X @JoshCRubin

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Mortality is a fabric more important than money, politics, and belief systems.  We all share the same responsibility of health; the only variable is the time in our life we acknowledge it.

Rare/undiagnosed consumer behavior is the most intense example of participatory responsibility.

When patients and caregivers are diagnosed with severe rare conditions or seek a diagnosis for debilitating symptoms, they very quickly decipher what they can and cannot control.  This advanced behavior allows rare/undiagnosed consumers to activate their wholly aligned intentions and abundant time. The primary and most helpful use of this energy is data aggregation.

Something very special happened last week: At 5 am on Wednesday at Newark International Airport, I was eager to fly to San Francisco to attend an Advanced Research Project meeting as part of Health and Human Services (HHS).  The Thursday meeting was for a curated collection of 150 leading experts in Artificial Intelligence (AI), Genomics, Informatics, Data Science, Health Data Interoperability and Rare Disease Research to help expedite the diagnostic odyssey through leveraging AI.

Shortly after landing, I received news about the executive memo instituting a “freeze” for travel and external communications for the HHS.  Stepping off a 6-hour flight, my brain was working to process this news.  The bizarre and frustrating helplessness reminded me of many unfavorable diagnosis moments I’ve experienced with my sons.

My 5-year-old was born with ultra-rare Diamond Blackfan Anemia; treatments include steroids, blood transfusions and bone marrow transplant. He is also autistic.  My 3-year-old was born with VACTRL association. He now has unexplained profound deafness and neurological tumors.  These “Oh-No! moments” have sharpened my processing ability to accept the environment I cannot change and understand choices I have.

After my second son was born with a different rare diagnosis, but subjected to the same antiquated use of data and technology tools, I realized the power of my perspective to help improve healthcare.  I put my career as digital product UX designer on hold indefinitely and spent the next two and half years traveling and meeting  ecosystem leaders.

We are on the cusp of a new paradigm in medicine. Advanced consumer behavior, national policy and AI capability present a new environment for us to leverage 60 Zetabytes of collective health data.

Thursday’s Advanced Research Project meeting marks a critical focus on the heightened participatory behavior of rare disease communities.   Consumers of undiagnosed and rare chronic congenital genetic diseases know their diagnoses are underfunded and underserved.  As consumers with wholly aligned and abundant time to devote toward positive outcomes, they deploy their energy to help providers and researchers in any way they can.  This consumer energy is the gateway for AI tools to leverage massive health data sets for more effective diagnosing, treatment and discovery.

Making sure all health data is accounted for and harmonized into a linear data set, is critical for rare/undiagnosed consumers.  With access to complete data sets, providers have comprehensive details to help optimize effective diagnoses and treatments, but do they have time to analyze them?

AI is an extraordinary data processing solution to limited human bandwidth.

If fed comprehensive linear health data sets, AI can help achieve accurate diagnoses.  It is important to realize consumers have the sole responsibility to aggregate these data sets. With the help of “data-access-rights” mandates from the 21st Century Cures Act and interoperability data standards of HL7®FHIR®, for the first time consumers have the technology and policy to fulfill this responsibility.

Thursday’s fortuitous gathering was a result of exceptional ability and altruism of the Advanced Research Project invitees to capitalize on the opportunity to affect change. Eighty-five of the original 150 attendees, who already traveled to San Francisco did not squander the opportunity.  These leaders put aside individual agendas for a higher purpose.   The impromptu open discussion had a clear consumer focus.   With a shared sense of humanity the unanimous consensus was that for real innovation to happen we must partner for the righteous benefit of the consumer.

UC San Francisco was gracious enough to provide a venue. Rare disease pioneers in genomics, AI, data aggregation and research from Stamford, U of Chicago, U of Michigan, Harvard, UC Irvine, Global Genes, NORD, Citizen Health, CZI, N1 Collaboration,  Sage Bionetworks, Truveta,  Across Healthcare, IQVIA, TISLab, OPTUM, ADA, Genial, Netrias and others collaborated freely.

People continually tell me how harrowing it is to be a parent to severely ill children.  Beside reminding them we are all on the same journey, I let them know about my euphoric sense of purpose as I try to improve the lives of humanity as much as anyone has in history.  The energy and emotion of this January 2025 meeting in San Francisco produced a landmark moment of agreement and action.

If not us, then who?

Cummings is a digital product UX. After the birth of his two sons, both with rare diseases, he focused his energy on healthcare modernization.

The post More important than Time and Money appeared first on SPM Blog.

For decades, policymakers, CEOs, politicians, doctors, nurses, healthcare workers, caregivers, and anyone who’s been a patient inside or outside a hospital has known one simple fact — the US healthcare system is broken.

Every other first world country has long figured out how to provide affordable healthcare to their citizens. The US, on the other hand, has only figured out how to create a complex, complicated “system of care” (which is not a system and certainly not one of caring) that manages to bankrupt thousands of Americans each year, offers sub-optimal care in numerous cases, and angers nearly everyone who is forced to participate in its lunacy.

Despite these problems, vigilante justice is not the answer to fixing our broken system. What we can do is change the US healthcare system through reform and expressing our frustration with the misaligned profit motives that value profit over healthcare.

How we got here

We can partially blame a well-meaning man by the name of Abraham Flexner. Flexner was what we would now call an education reformer. In 1908, he examined the state of the US college system that attracted the attention of the powerful Carnegie Foundation. The Foundation commissioned a similar report on medical education — now known as the Flexner Report — which he released in 1910. Flexner was not a physician. but nonetheless his report led to wholesale and large scale reform in the education and training of doctors in America. It brought European professionalism to the practice of medicine in America.

Many schools serving African Americans and women were closed, exacerbating racial and gender disparities in medical training and healthcare access. Reducing the number of physicians graduating from schools also resulted in a shortage of physicians, which began the long, slow progression of raising healthcare costs for all Americans.

Flexner also was not an economist, but he proposed a new economic system of reimbursement for physicians in his report. His fear, grounded not in any systematic or scientific data but just anecdotes of the times, was that physicians were economically motivated to provide unnecessary care to their patients, since patients directly reimbursed doctors for their services. He recommended a third-party payment system to reimburse physicians and other healthcare workers as salaried workers via non-profit hospitals, to take the perceived conflict of interest out of physicians’ hands.

World War II again altered the landscape of providing medical care in the US. Wage controls led employers to offer health insurance as a benefit to attract workers. This system persisted after the war, cementing employer-sponsored insurance as the dominant mode of coverage in the US. Unlike European countries, where social insurance systems emerged after WWII (like the UK’s National Health Service), the US instead relied on private insurers. This created a fragmented system where coverage and costs varied significantly across the population.

Non-profit hospitals now had access to larger financial resources, too, due to insurance premiums now being paid to them by employers on a consistent basis. People were not only cut off from directly paying for their individual healthcare charges, they also had no understanding how much anything healthcare-related actually cost. This was all baked into the US tax system and codified over the intervening decades.

Naturally, this is a grossly simplified overview. The history of medical practice in America is complex, but if you needed to identify the point where a sea change took place, it was after the release of Flexner’s report.

Where we are today

With two competing corporate organizations competing for healthcare dollars now — insurance companies and hospital systems — physicians and patients were all but written out of the economic system. Yes, physicians provide care to patients, but all the finances tied to that care are purposely opaque. With this opaqueness comes complexity, and the need for ever more staff to make sense of it all. Insurance premiums and administrative costs skyrocketed to address this need, but also because nobody knows what anything truly costs in US healthcare.

“Approximately 7.3 cents on every dollar actually goes to a physician who provides all the care,” says Kian Mondolou, MD, a transplant surgeon. “So the vast majority of money isn’t going to doctors. And when they say, ‘Oh your surgery costs $10,000, it’s not the surgeon that’s making $10,000.”

Health insurance companies are set up to ensure employers are only paying for “needed” medical care. However, they alone decide what is truly needed, based upon criteria checklists that are all driven by opaque algorithms. It is likely few C-suite executives even understand their own company’s algorithms, but these systems ensure health insurance companies make money for their shareholders. Actually paying for healthcare costs is a secondary concern, because the less they pay, the more value shareholders receive (and of course, the large the bonus checks are for executives and managers).

Make no mistake about it: health insurance companies like Cigna, Elevance, and UnitedHealth Group make billions of dollars in profit every single year. And not small profits, either — between $5 and $22 billion. Each. Why should a company that is acting as a glorified bookkeeper be allowed to make so much money where the incentives to actually provide less care in order to make more profit are completely backwards from a system most Americans want? Should healthcare be a profit center that profits even more by denying you care when you get sick?

As Scott Carney puts it his video below reviewing the state of American healthcare, “It’s so monumentally messed up that most Americans feel basically powerless in the face of the historical and economic exploitation that has landed us as hostages to insurance companies.”

Innovators can’t innovate without the data

It’s really, really hard to innovate in a field when you don’t understand the data. And in healthcare, there is very little financial transparency. This is by design. If physicians and patients figured out how to simplify the complexity of the American healthcare system, they might understand that cutting out all those administrative costs would greatly reduce the cost of care.

Steve Case & Revolution Health Group

A few people have tried. Steve Case, the billionaire founder of America OnLine (AOL) launched a company called Revolution Health Group in 2005. A part of the company’s launch announcement noted that, “Most people don’t feel like empowered customers, they feel like a peripheral part of the process, with seemingly everybody but them being able to make the decisions that most impact their lives and the lives of their loved ones.

Over the past year, Revolution Health has been working behind the scenes to create the first comprehensive, consumer-driven health care company, designed totally around meeting the needs of consumers and giving them more choice, control and convenience.”

Nothing came from his vaunted efforts and he sold the company in 2008. One of the driving forces for this failure was the inability to access and make use of the financial and usage data that the company could then innovate around. For instance, where could technology be put to better use to free up a healthcare worker’s time? Or, where could we streamline paperwork or record keeping or financial reimbursements to take some of the friction out of the system?

Mark Cuban and Cost Plus Drug Company

Others have had more success. Mark Cuban launched a public benefit corporation called Cost Plus Drugs in 2022 to help address one small part of the healthcare system — the price of prescription medications. Consumers in the US pay the highest prices on medications in the world. This is due to a multitude of factors, but administrative and marketing costs are a large component of this higher drug pricing. (The other major component is that US consumers are financing research for new drug development for much of the rest of the world.)

Cost Plus Drug Company seeks to lower the cost of popular medications for US consumers. It cuts out pharmacy benefit managers, just another administrative layer in the already heavily administratively-laden healthcare system. Pharmacy benefit managers provide very little benefit to anyone, yet they’ve marketed themselves as necessary to the system. Cost Plus Drugs demonstrates this to be patently false. According to Wikipedia, they now offer over 2,200 drugs and “the drugs are sold for a price equivalent to the company’s cost plus 15% markup, a $5 pharmacy service fee, and a $5 shipping fee. The company ships to all 50 US States.”

Innovators have had a famously tough time with healthcare, however. Nibbling around the edges of the system seems to provide some value for the amount of reform effort required.

Time to kick out people who have no business in your healthcare

What the killing of Brian Thompson, the UnitedHealth Group’s CEO, demonstrates is the level of frustration many Americans experience with the current US healthcare system. While the Affordable Care Act of 2010 (also known as “Obamacare”) was a valiant effort to fix some of the problems of the system, it improved some things while making other things worse. Yes, more Americans have (deplorably substandard) coverage due to the law, but insurance companies found even more ways to earn even more profits through loopholes in the law.

As long as for-profit companies are allowed to operate in the healthcare space, they will always focus on increasing shareholder value and executive pay over ensuring value for every healthcare dollar spent. Profit is always going to be a more motivating force than good will — or even following the law — in a capitalistic system.

Non-profits and public benefit corporations are not cure-alls, but they are a step in the right direction. While profitable non-profit hospitals have taken their windfalls and poured it into building new facilities (that in many cases are unneeded and meant to reward the most profitable parts of their operations), they can be managed through new incentive structures and new laws to focus more on transparency in pricing and increasing the focus on patient care. Colleagues have actually compiled a list of possible ways to reform the US healthcare system.

Such reforms wouldn’t be easy and without pain, especially to the insurance companies. But it’s high time for Americans to kick out people who have no vested interest in your healthcare — shareholders, administrators, managers, and highly-compensated C-suite executives — and get them out of the partnership patients have with their physicians. This should be a one-on-one relationship that values respect, listening, and collaborating together on the patient’s care. It is not a place to look to monetize every minute of the physician’s time, or to eek out every dime on placing a bandage on someone’s wrist.

It’s high time Americans be heard. It is, after all, your health on the line.

Your Health, Your Voice. Be informed. Get involved. Demand to be heard.

#YourHealthYourVoice

The post We Can Change the US Healthcare System: Your Health, Your Voice appeared first on SPM Blog.

The news cycle is moving on, but the killing of Brian Thompson was awful, no matter how one feels about the shortcomings of the American health care system. In a recent New York Times opinion piece, Andrew Witty, president of the UnitedHealth Group, wrote that no one would set out to design the system we now have. We can all agree on that. Our goal in participatory medicine is for “patients to shift from being mere passengers to responsible drivers of their health, and in which health care professionals encourage and value them as full partners,” using Gilles Frydman’s words. But the patient/clinician relationship happens in the institutional contexts of health systems and health insurance companies, to name a few, that exert force on that relationship. To be participatory, I think it’s important to be both health and health insurance literate.

Complexity and a lack of transparency dog the US health system, and institutional interrelationships can be a barrier to being participatory. Referrals out of a health system may not be made because of the health system’s desire not to have patient utilization ”leak” into other systems, even though the patient’s insurance policy permits using other health systems. An insurer’s “step therapy” policies can result in getting suboptimal drugs, when it is clear to the clinician that the drugs being used aren’t achieving the clinically needed result.

Improvement of the health system won’t happen overnight, so I work to be literate about both my health and my health insurance and understand who is responsible for what.  That doesn’t solve all problems, but it can help. I choose my clinicians and my insurer based on their respective satisfaction and performance ratings.  I work to understand health system’s and health insurer’s referral policies. I use both my health system’s and health insurer’s patient/customer service to gather the most information I can. I learn the basic concepts of insurance, reading my policy and talking with customer service to know what to expect about how coverage might be administered, and when my clinicians are knowledgeable, talking with them about whether the care they recommend might be covered.  Most of all, I need my insurance carrier to be 100% transparent about their policies and the logic behind them. It shouldn’t be this complex, but it is. Until it isn’t I want to be both health and health insurance literate.

Mary Hennings is board chair for SPM.  Her professional background is as a senior healthcare executive with 35+ years of broad health care experience. She has expertise in formulating product strategy and new products, and developing and implementing organizational innovations that are aimed at supporting better care, coverage, and customer experiences. She has held leadership roles in both integrated health care delivery and health insurance settings.

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Over the past several months, SPM’s board has engaged in a planning effort, as it approaches the fifteenth anniversary of its creation. Our goal is to assess the state of the Participatory Medicine movement and discern where SPM could have its greatest impact in changing the culture of health care so that “patients shift from being mere passengers to responsible drivers of their health, and health care professionals encourage and value them as full partners.”  After meeting with dozens of internal and external stakeholders – including many of you – we have conceived an exciting initiative.

Our goal is to create a Participatory Medicine Index that will be able to measure progress toward achieving Participatory Medicine. We plan to develop three separate indexes that will measure patient/caregiver, clinician, and health system progress toward the integration of Participatory Medicine principles into their actions and behaviors. The indexes will be developed sequentially, starting with the patient/caregiver index, then adding the clinician index, followed by the health system index. We envision an annual consistent measurement to allow tracking progress toward Participatory Medicine ideals. We also want to use sample sizes that will support segmenting results regarding such issues as health equity, differences by clinical specialty, use of health technology, and geography. 

The value delivered by this approach will be that all stakeholders will understand their own participatory behavior against ideals and relative to others to improve Participatory Medicine practices. Each index will ask participants to reflect on their own participatory medicine behavior and practices as well as that of other stakeholders. Progress will be measured regularly to drive awareness, education, and change.

Our review of the state of Participatory Medicine identified notable gaps in current approaches to measuring the performance of health care delivery today that the Participatory Medicine Index can fill. Many existing measures look at patient satisfaction and engagement but focus on transactional aspects of care (e.g., did you wait an acceptable length of time for an appointment?), on patient adherence (e.g., did you understand how to take your medication?) or on gaining market share (e.g., how likely are you to recommend us?). 

While those measures are often important, they are not sufficient. They don’t measure the mutually collaborative relationship that should exist between clinician and patient. There are almost no measures of clinician partnership with patients and patient partnership with clinicians. We also found that the institutional context that can support effective patient/clinician partnership is also under measured.

We’ve shared this concept with a number of thought leaders and experts among our membership and outside SPM. Their reactions have been overwhelmingly positive and supportive. We understand that developing and implementing this initiative will be challenging. We believe we have tested the concept enough to share our thinking with you and look forward to collaborating with more SPM members to formulate and test the index. 

There is an old adage that you can’t improve what you don’t measure. We think it’s high time that there are measures of Participatory Medicine through which we can build awareness, educate, and inspire adoption of it. We know that the application of Participatory Medicine principles improve care quality, cost, outcomes and satisfaction for both patient and clinician. That is our core intent. 

The Society has a big job ahead. We know we can do it with your help.  We look forward to your thoughts and ideas about this initiative as well as your participation in development of the indexes. Please contact me at pmindex@participatorymedicine.org to join us in this critical work.

The post Exciting 15th Anniversary Project and Opportunity for Member Engagement appeared first on SPM Blog.

I care for a diverse population of individuals in my primary care practice. It’s hard enough to motivate behavior change in people who have little motivation, but it’s even more challenging when it’s hard to connect with them because of cultural disparities. But sometimes, through trial and error, we can get it right.

Joseph (not his real name), a divorced 80-year-old African American, has been my patient for over 20 years. He has type 2 diabetes, hypertension, a high BMI, and chronic kidney disease. He had been a pack-a-day smoker and was drinking too much alcohol. A few years after he developed coronary artery disease and required a stent he was able to quit smoking and also stopped using alcohol, which was a tremendous accomplishment. We were even making some improvements in his diet. But he was stubbornly sedentary and increasing physical activity remained elusive.

Unfortunately, despite repeated promises to do so, he was never motivated enough to exercise. His neighborhood was not great for walking outdoors. There was a treadmill in the basement of his building, but there was no TV and he found it boring. No matter what I suggested it just didn’t work.

A few months ago at our last visit, I had an idea. I remembered a study in which participants who were permitted to listen to engaging audiobooks only when they were exercising did more exercise than those who did not. I also enjoy listening to audiobooks when I exercise.

I ask all my patients as part of their annual preventive health visits if they have any hobbies. I checked his record and noticed that Joseph liked reading. I asked him if he had a smartphone, which he did (like 97% of the US population, including an impressive 76% of those 65 and up), but he said he didn’t know how to do much with it. Joseph couldn’t afford a subscription to Audible, but I have found it wonderful to listen to audiobooks from my public library using the Libby app, all for free. Joseph had a library card, so we were in business.

I then spent a few minutes helping him download the Libby app and create an account using his library card, and then we downloaded an audiobook by James Patterson, who Joseph told me was his favorite author. You should have seen the joy in his face when he started listening. He told me he would try listening while using the treadmill in his building.

I had no idea if this would work for Joseph because nothing else did. But today I saw a note from his cardiologist. It said:

“He had started to use the treadmill after Dr. Sands installed the Libby app on his phone, and would walk for ~1 mile at a time.”

This was a huge accomplishment, something I never thought I would see. Unfortunately, the next sentence was:

“However he stopped using the treadmill for the past two weeks and can no longer access the app.”

The cardiologist reinstalled the app for him and he is presumably enjoying listening to James Patterson thrillers once again as he improves his health.

This is not a scientific study, but where the rubber meets the road in healthcare is in our personalized interactions with individual patients. We don’t know whether this behavior will persist over time, but when a behavior change becomes a habit it becomes self-sustaining. A mile of walking a few times per week may not sound impressive, but moving to that from a lifetime of sedentary behavior is monumental.

Sometimes motivating patients involves creativity and personalization. But too frequently the pointing and clicking of EHR use and struggling to get through the day prevents us from listening to the patient and understanding their challenges, needs, and motivations; we need to meet them where they are.  Healthcare is not a transactional system–it is best practiced as a collaboration between the patient and the healthcare professional, which we call Participatory Medicine. In this case, Joseph was willing to walk on the treadmill but needed something rewarding in return. Figuring that out with him and solving his problem only took a few minutes but was deeply satisfying (improving the joy of practice) and may measurably improve a patient’s life.

Danny Sands, MD, MPH, FACP, FACMI is a founder and Chief Advocacy Officer for the Society for Participatory Medicine.  He is an Assistant Clinical Professor of Medicine at Harvard Medical School, and frequent speaker at medical conferences.

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During my doctoral study in nursing practice a couple of years ago, I learned about a champion of nursing informatics, Dr. Nancy Staggers. Dr. Staggers assisted in developing the American Nursing Association’s Scopes and Standards of Practice. She also contributed to electronic health record (EHR) implementation.

EHR utilization is important for nurses, other staff members, patients, medicine in general, and other disciplines. Dr. Staggers concentrated on the feasibility of using health informatics. She wanted people who used EHRs, including patients, to have the ability to find and use critical information.

This reminded me of when I implemented a project at an institution where I worked with Sickle Cell patients and their families. As a part of a Sickle Cell medical home for quality improvement, our patient population was asked to test out a new portal. The portal would allow patients to see their medical records and enable them to view personal medical information including labs, diagnostic tests, and other information. At the time, I was delegated to sign up patients and their families and teach them about the portal. I immediately identified two gaps. Several of the families did not have a computer or access to one, nor did they have email addresses. I had patients sign up for email addresses using Gmail and Yahoo. We had tablets in the clinic and a few computers at a satellite clinic they could use. Now with access, I trained them how to navigate the portal. I later made a PowerPoint presentation and taught my colleagues on the Sickle Cell team how to use the portal.

I worked at another institution that had a medical records portal. That one allowed patients to see labs, including COVID-19 testing results, Hemoglobin results, and other results; make appointments, request prescriptions, send messages to providers, etc. The portal also had a wellness tool for mood and counting steps walked in a day. Sickle Cell patients can use the portal to identify if they have a COVID-19 infection after getting tested, which could lead to adverse events such as a Sickle Cell Pain Crisis or Acute Chest Syndrome, which is similar to pneumonia. We had several Sickle Cell patients who were COVID-19 positive or had family members who were COVID-19 positive. The portal can also be used to alert providers to pain symptoms when pain is moderate, but not severe. This can assist patients in attempting to treat their pain at home, treat the pain at an outpatient infusion center, and hopefully avoid hospital admission. It can also be used to request prescriptions so that the patient will not run out of pain medication, hydroxyurea, coumadin, and other essential medications.

Patients may be more compliant with appointments and have the option to have virtual appointments. Once barriers to using technology are identified, portals can prove to be a useful tool for both patients and healthcare providers.

One of the competencies from the American Nursing Association’s Scopes and Standards of Practice is that the nurse informaticist will champion patient access to electronic medical records and mobile technology for healthcare and decrease disparity. This is an example of transferring technology into nursing practice and then on to patients. This is also one of the tenets of Participatory Medicine. Participatory Medicine not only endeavors to maintain and keep the relationship between the healthcare provider and the patient collaborative but strives to embrace technology and incorporate it into the patient’s comprehensive care. As we embrace new technological advances, let us try to keep it equitable, beneficial, and participatory.

Dr. Brenda Merriweather is a Clinical Nurse Specialist, Sickle Cell Advocate, and board member of the Society for Participatory Medicine.

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