Following almost every discussion around the use of social media in health (and healthcare) I’m left with a recurring feeling that people are taking part in the one same conversation, using identical words, but talking about different concepts.  I’m sitting here at the kitchen table after a weekend of anaesthetising unwell patients, trying to crystallise in my own mind what these different concepts are, and how they relate to these unwell patients, their well relatives, and the staff caring for them.

I’ve recently understood that “social media”, “health”, and “healthcare” are best described as a “suitcase words”.  Artificial intelligence researcher Marvin Minksy described “suitcase words” as words containing many different concepts. These evolve to improve the efficiency of daily conversations, but can be singularly unhelpful when trying to match these jumbled concepts to real actions and outcomes. I feel it’s the difficulty in matching of words and concepts during these conversations to real improvements in outcomes that hopeful, but confused, clinicians are struggling with.

Minsky talks about unpacking these suitcase words into smaller, more actionable concepts.

Lets start with the term “social media”.  These can be roughly unpacked into public networks based on common interests (twitter.com), private networks based on social and organisational relationships (Facebook.com, yammer.com), or mixed public/private networks (google+).  Social media in its essence is networked multi-directional content. Email and chat channels, widely available since the early 90′s fit this description, but various factors have meant that the network effect fuelling the uptake of newer communication tools never developed to the same extent.  Content creation and distribution has since become more efficient with advancements in technology and evolution of culture, and now almost anyone can create content via their affordable devices and data plans with a unique human behaviour that has been “shaped” to share.

What about the word “Health”?  Are we talking about wellness and its tremendously broad determinants, or are we discussing the management of illness (healthcare).

What about “Healthcare”? Lets unpack this to slightly more focused suitcase terms of quality of care, productivity, and branding (staff and patient recruitment).

At a recent Sax Institute forum entitled “Bringing the social media revolution to healthcare“, I sat in a mixed audience of administrators, clinical staff, journalists, private hospital body representatives, marketers, and various other stakeholders in healthcare.  We listened to Mayo Clinic‘s experience of exposing their already successful brand to the unpredictably stormy seas of social media.  I came away thinking that social media led to positive improvements in Mayo Clinic’s brand, as well as improvements in patient outcomes through distribution of information to patients for which Mayo Clinic had the expertise to manage.

I spoke to attendees whose primary interest was in organisation branding and its potential for staff and patient recruitment and who thought primarily about twitter, linkedin, and facebook.  I spoke to health promotion practitioners whose primary interest was in assessing sentiment and promoting behaviour shaping to improve population health through tools such as twitter, facebook, and youtube. The benefits flowing from the evolution of communication has been obvious to private healthcare services and health promotion researchers because their primary roles are to assess sentiment and shape behaviour as marketers, and that’s what the two-way mass communication platforms of twitter and facebook are particularly good for.

I spoke to administrators in healthcare organisations thinking about how to grapple with privacy, legal, and productivity risks. Why their staff would want access to youtube, twitter, SMS, facebook, what they are likely to overshare, and what social media policy documents need to be put in place.

Unwell people are beginning to think about tools to help them connect to people with shared experiences (patientslikeme, curetogether ), illness information produced by experts (mayoclinic, Wikipedia, quora), and the people and services that help them get well (ratemydoctor), as well as tools that improve communication with their clinicians (hellohealth, healthvault, teleconferencing).

Healthy people have picked up on the potential of tools that connect them with people and information that keep them healthy.  They think of twitter and blog streams dealing with nutrition, exercise, and wellbeing. They think of socially connected health metric applications that they hope will positively shape their behaviour (the eatery, runkeeper, dailymile, trackyourhappiness).

Clinicians’ interests at this point in time seem to be in the understanding of the implications of social media tools to them and their patients. They are, for good reasons, unable to provide specific clinical advice through public networks, and the vast majority of clinical staff have no access private organisational communication networks that may improve productivity within their organisation. The default position for people directly responsible for the health outcomes of others is one of well-deserved skepticism. They are unable to crystallise in their own mind which of the jumbled concepts in “social media” would help them do their job better.

Over the next few years communication tools will evolve and clinicians will be given access to communication networks with more appropriate privacy controls for the information being exchanged.  Discussions will also start to focus on narrower and more relevant concepts, and as this happens, the use cases for clinicians and the problems these connected technologies are able to solve should become clearer.

Note: I’d like to attribute the concept of “suitcase words” to @arcwhite and the clarification of behaviour “shaping” vs “change” to @yhpo and @bjfogg

Recently released analysis of the English Longitudinal Aging Study (ELAS) reveals some potentially interesting results around, amongst other things, measured biomarkers and an individual’s wealth.

The analysis of data from British citizens over the age of 50 shows what appears to be a statistically significant correlation between the serum level of dehydroepiandrosterone (DHEA) and their wealth quartiles. (see first table)

What exactly does this mean? At the moment it’s just a correlation between two variables, and its difficult to draw any conclusions. What exact role this steroid androgen precursor may play in the health outcomes is unclear. There is nothing to suggest that replacement of low normal DHEA levels with will improve outcomes, and if the correlation is robust, may simply be an indirect indicator of multiple health behaviours in people in the upper wealth quartiles. You’ll see if you examine the data (second table) on physical activity and wealth, wealthy people are significantly more likely to be physically active. DHEA levels might simply be an indirect reflection of this and other behavioural disparities.

The significance of this research is in its ability to improve the evidence base for policy development. If we understand the factors at that lead to poor health behaviour (that ends up costing both the individual and the tax payers), we’re in a better position to effect real change.

Interestingly, Edward Jenner picked up on one of the first wealth biomarkers in 1796. He was a general practitioner in England who observed that milkmaids were spared the telltale facial scars of smallpox that seemed to afflict the female aristocracy. He postulated that cowpox exposure amongst the milkmaids protected them from developing this disfiguring disease. He tested his theory by innoculating a semi-willing subject with cowpox, later exposed him to smallpox, and by documenting his resistance, developed the world’s first official smallpox vaccine.

You can get a copy of the ELAS analysis here. http://www.ifs.org.uk/elsa/publications.php?publication_id=5315

Posted via email from Pieter Peach

“The Machine Stops”, is a dystopian short story published in 1909 ago by EM Forster (free here) laying out a future where a segment of human society becomes terminally dependent on machines. Humanity loses both its capacity, and will, for a life free of technological augmentation.  The highest form of existence is sitting alone in a self-contained, underground room connected to the rest of humanity only through the machine. Ideas and thoughts are valued over first hand experiences of the real world.

Tempting, as it is, to generalise and join the hordes of well intentioned late adopters in claiming that the internet is incrementally isolating us, it might be worthwhile taking a look at what is actually happening around us.

In the same way that transport enabled us to engage more with unseen worlds, online communities are enabling us to engage with people located around us. Location-based applications are just beginning to make their way into our mental frameworks.

A hint of the near future of human engagement was evident at SXSW Interactive this year, where location based applications such as Foursquare and Gowalla began to reach critical mass adoption. With a location enabled mobile device individuals began “checking-in” at various venues, notifying friends and, often, strangers of their location. Up to 200 people were checked in at some locations.

On top of these platforms, strangers are beginning to be connected by matched attributes such as “I’m interested in mobile tech”. Pairwise.mobi was an application built by a two man team in 48hrs on thestartupbus.com which did exactly this.

In the same way that we have somehow miraculously become both comfortable speaking to complete strangers and desensitised to exhibitionism on Chatroulette.com, we will soon be more comfortable with these applications introducing us to relevant but complete strangers that happen to be sharing a venue.

This may well be the “threads of self-denial” referred to be EM Forster, but until technology advances to the point that virtual engagement becomes indistinguishable from physical engagement, we have an opportunity to take advantage of a new era of location-based serendipity.

Do you see potential, or do you think location-based apps are overhyped?

The entire audience was silent after watching Sunitha Krishnan’s powerful TEDIndia talk on the issue of child sex trafficking in India in November this year.  People needed time to digest her message.

She spoke about the organisation Prajwala she began almost 15 years ago in Hyderabad, India, and its mission of helping trafficked children.  Prajwala finds, extracts, and supports women who are trafficked into prostitution as children. I visited her and Prajwala in Hyderabad after the conference to speak to her to understand more about it.

In conversation she displayed an intense, resolute determination, and selfless pride in the activities of the organisation.  She described a multipronged approach aimed at helping these children by providing equal parts psychological support, civic support, and vocational support. She made it clear that none of these approaches alone could achieve the desired outcome, which was full reintegration into their community.

Her organisation worked to table, and have civic compensation legislation for trafficked children passed through Andra Pradesh state parliament to enable their civic rehabilition.  This, she described, was crucial to having the children recognise themselves as victims rather than perpetrators, and crucially, have that same mindshift occur in the communities they were re-entering.

In addition, Prajwala has set up seventeen schools, educating the children through all stages of primary and secondary education.  I visited one of these schools and spoke to a few of the teenage girls, one of which was now in university completing a Bachelor of Commerce.

On the same grounds, they had vocational training workshops in metalwork and woodwork, and were running a printing enterprise. One of the most difficult aspects to deal with was the fact that approximately one out of three girls had contracted HIV prior to their arrival at Prajwala, and medical support was a significant challenge.

Sunitha has suffered both threatened and real physical abuse from the vested interests in child trafficking.  She has been attacked in fourteen separate incidents, and at the time of our meeting, was waiting for an operation required to fix her hearing, from a recent attempt on her life.

The consequences of Prajwala’s work is inspiring.  Over 3,500 children have received support, 600 of which have gone on to marry and have 46 children, who she affectionately described as her grandchildren.  This, by anyone’s standards, is a big achievement.

Watch her talk above to hear it in her own words.

Furniture made by the women at Prajwala

]]> http://www.ppeach.com/blog/2009/12/sunitha-krishnan-and-prajwala-fighting-for-trafficked-children/feed/ 36 http://www.ppeach.com/blog/2009/12/sunitha-krishnan-and-prajwala-fighting-for-trafficked-children/ http://feedproxy.google.com/~r/PieterPeach/~3/ZYNRszJSQUA/ http://www.ppeach.com/blog/2009/11/bribebusters-com/#comments Sat, 28 Nov 2009 17:22:42 +0000 Pieter http://www.ppeach.com/blog/?p=456
Pick a root cause of much of India’s beaurocratic and economic pain, and wrap a simple business model around providing a solution to it.

What you get is a company providing anti-corruption services to people experiencing roadblocks in their dealings with bribery ridden government departments.  This is gold.

This social enterprise is the brainchild of Shaffi Mather and his partners out of India, and I saw him present their idea at TEDIndia in November this year.  Shaffi’s legitimacy in this space includes his qualification as a lawyer, property developer, and founder of 1298 Ambulance, a cross-subsidy model social enterprise successfully making ambulance services available to the people of Mumbai.

He had realised that the cost of providing people with help in tackling bribery, utilising existing Right to Information legislation, was significantly less than the cost of the bribes being requested. Instant business model, with a ready market (~$1 trillion). Just add chutzpah.

Best part is this. On stage, his flippant remark “We could call it something like bribebusters.com…”, led to an email that night by an international paper requesting an interview with him about this “BribeBusters.com” they’d seen mentioned on the twitter backchannel of the TED event.  1. He hadn’t registered the domain name.  2. He didn’t know whether a company with this name already existed. 3. He immediately registered the (surprisingly) vacant domain name once he recovered from his brief panic, fearing a defamation suit from an existing company.

Whether it will be called Stop Bribery and Prevent Corruption, or BribeBusters.com, its a great story. Listen to his talk below.

Even though they were medically trained, they realised early that without education and nutrition they were fighting an uphill battle. The quality of the school was impressive, educating children from age of 2 through to highschool graduation, and boarding about 30% of their chidlren.  There were 30 computers in each school, and although one of the schools had access to the internet, as yet, the remotest of the two schools didn’t. I couldn’t help but think about the resources these kids now had access to through these computers that they used to have to rely on donated books for.

The founders were still working there fulltime as doctors/administrators.

I don’t think the question is whether people should, its a question of how they should. Twitter is just an open conversation tool, and people will use it to talk about issues important to them, and if swineflu/H1N1 does take hold, it will become one of those issues.

Access and distribute reliable information. Thankfully, several streams of information are available from official government and international agencies. (WHO -website & twitter CDC – Website, Twitter, Email).  The higher the official signal to unofficial noise, the better.  You could argue that it is often slower and more deliberate than other sources, but they have significant cost/benefit analyses to make with each official release.  Partially uncertain information is occasionally communicated, but only after due consideration.

Focus on facts and confirmed cases. Real numbers are much less than that reported in the media. If somebody publishes something without a link to either official or reliable press (eg. AFP) sources and you’re still interested, try looking for a pattern of multiple first hand accounts rather than a chain of retweets. Specifically with the current H1N1 Swineflu outbreak, “suspected” cases can be very misleading.  Once an “area” (eg. often a city) has a single laboratory confirmed case, everybody who presents to the emergency department, or general practitioner, with at least two of 1) runny nose or nasal congestion, 2) sore throat, 3) cough, 4) fever or feverishness gets labelled as a “suspected case”. This is all in the CDC case definition here.  You can imagine the number of patients with otherwise innocuous colds that come through like this everyday, let alone when the population is on heightened alert.

The next bit of information of interest to most people will be a change in the global pandemic alert phase which can be found here. For Australians, the federal government has a website up at http://www.flupandemic.gov.au/ with some information on pandemic preparedness with links to each state health departments. Its not the best, but at least its something local for both clinicians and the public.

The best source of CONFIRMED US cases are to be found here http://www.cdc.gov/swineflu/

Below is an unofficial map from http://flutracker.rhizalabs.com/ of human cases of H1N1 infection.

Know of any good, reliable sources of information people might find useful?

Whilst my body is long gone, I’m happy to still have the opportunity to talk to you like this, in a way my great great grandparents unfortunately didn’t have to speak to me. Little did they envision the opportunities we now possess to have a permanent record of our every online conversation built into a relatively accurate personality construct that can speak to you in the way that I’m speaking to you now.

You might be accustomed to this transgenerational conversation, but let me tell you, we aren’t. Our parents are just getting comfortable with the idea of email, and our generation is just getting accustomed to the idea of public conversation on platforms such as blogs, microblogs, and open social networks. You will know more about our tastes in music, our interests, our passions, our foibles, and our lessons learnt than we ever knew about our ancestors.

I’m sitting here listening to a radio station based on a friend’s excellent taste in music. This is a small step, so I can’t even begin to imagine what will be possible in eighty years time. Eighty years is a long time, and if you’re reading this, its clear the human race has somehow figured out how to convince the machines not to eliminate us from this beautiful planet. Congratulations on a fine achievement, god knows how you did it.

If you’ve chosen to download my construct into your family pet robot, then thats alright by me. The only condition I’d place on this is that I get to go camping with you. I won’t mess up your car/hover vehicle/magic carpet or whatever it is you move around in. If I’m speaking to you in a virtual space, ask me to take you to the Abbotsford convent for a beer and some live Cuban music on a warm Friday evening in December 2008. You’ll love it, really.

If you’re a construct talking to me having already eliminated all the humans,
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Its interesting to see market forces accomplishing a feat NGOs would be unable to (assuming they had wanted to).  As of 2007 over 50% of the world’s population now use mobile phones.  It took 20 years to reach 1 billion, another 3 years to reach 2 billion, and the 3rd billion took just 2 years.   Mobile phones and their future capacity for information distribution are making their way into the hands of the world’s least resourced.  Assuming there is bandwidth left over after everyone’s finished downloading Myley Cyrus ringtones, there will be an opportunity to connect people and distribute something useful.

Mobile phones will initially help enable banking and access to microcredit loans, and as the technology develops, we’ll see a gradual improvement in access to the world’s increasingly organised information.