Social media offers huge opportunities to help 'patients' become informed activists by emerging from behind the cloak of symptom and diagnosis, clutching the bottle of treatment, to become co-creators of our own health journeys. It does this by transforming the bases on which we make decisions about our health and how we engage with health professionals. In a medical model of health, we are patients carrying descriptions of pain and dysfunction with the expectation of an expert opinion on how these are to be reduced or removed. In a social model of health, we move from patient to activist by taking a shared role in understanding and managing our condition.
Social media can facilitate this process in a variety of ways. It can expose us to a much greater range of information, experience and opinion from both peers and professionals. For example, being able to track others routes through terminal diagnoses on www.patientslikeus.com or access health analytics on the performance of particular consultants through www.drfosterintelligence.co.uk. It can enable us to engage more directly and equally with professionals through online programmes and communities to arrive at a diagnosis, to explore treatment options and to negotiate health outcomes. This opens the door, for example, to a choice such as quality of life retention over quantity of life extension: ‘to die well’ rather than ‘to live poorly’. Further, social media can mitigate the loneliness of ill-health.
Mobile and digital devices can allow us to track elements of our health and share these with others. They can also remind us to take medications or let ‘buddies’ know how we are progressing. Essentially, social media presents an opportunity to turn the pursuit of health into a networked activity where the elements of relationship to others, combined with the health benefits of taking as much control as possible over our own health, are given an equal weight to the choice of diagnostic and treatment path.
Perhaps I am reading these early symptoms of social health a little too optimistically, given the contra-indications. For example, the difficulty of having more information is knowing what to trust. While Trip Advisor may reliably suggest the best hotel in Amsterdam, it may be harder to place your faith in contributions to mybestappendectomy.com. Even clinicians struggle to answer that eternal call, echoing down the halls of the Department of Health, for ‘evidence’. I cannot be the only one who has studied hundreds of online images of bumps, lumps and rashes trying to identify what ails my daughter.
Then there is the issue of safety. How can we know how others are using what we share in open environments, and can we be sure that what we write in distress may not come back to haunt us later? I have been working with a group of people offering online mental health services to devise some guidelines to good practice in these areas. For example, we have looked at the importance of skilled moderation to ensure that health communities become intolerant of viral bullies or carriers of internet Munchhausen disease. However, self-regulation will not be sufficient without educating ourselves about informed and safe use of the internet. This means that the ability to self-manage extends beyond health choices in social media to the use of the medium itself.
Beyond this lies perhaps the most fundamental challenge of all. The ability of the health professional and the patient to re-imagine their roles from something like ‘expert to guide’ and ‘ill person to activist’. I have known well-qualified people retreat battered from engagement with online communities; not from criticism but from a reversal of roles. Social media renders public what is often the preserve of consulting rooms which can feel exposing and threatening to those who have yet to learn new means of connecting. Similarly, there are those who will be daunted by taking greater control for their own health and who will need support to take those steps.
Notwithstanding the challenges, it appears to me that we are already on the road to social health and have moved well beyond a mate tweeting they have bird flu to a new landscape of engagement for health. How many of us could not walk bravely into this landscape if we have waited long hours for a few minutes of expert time or who have left a consultant remembering only the words between the lines or come from the GP clasping a prescription whose contents we do not understand? Similarly many professionals would prefer to see someone take leadership for their own health journey and be happy to help guide them along the way. So there appears to be little to fear in the early symptoms of social health. Rather, they seem to represent an opportunity to be healthily embraced.