#EMpowering Information in Health

Have just arrived home after three days of very different events in very different contexts but all with the same big message!

The first day, I was at the #developingNHSCBcitizenvoice event held by the NHSCommissioning Board for around 200 third sector organisations with an interest in citizen/patient/public voice. We heard an inspirational vision of an NHS that is led by principles of transparency, participation and collaboration from Tim Kelsey @tkelsey1 and Ciaran Devan (Nat Director and Non Exec Director/Macmillan on the NHSCB). Not to forget some excellent challenges and debate from Paul Farmer (MIND) and many more.

The second day, I was working with a small group of great people linked to South West Yorkshire Partnership Foundation Trust http://www.southwestyorkshire.nhs.uk/ on the co-production of an innovative approach to working with citizens to help patients navigate the health system linked to telehealth and other technologies.

And on the third day…. I was with 1000,s of ‘Executives’ mainly in and around the NHS at #confed2012

At all three events, voiced by many, were the following key messages:

  • The NHS is running out of time, we have one last chance to preserve what we all find precious about it, i.e. that it is relatively high quality, full of innovations, has a strong ethic behind it and is free at the point of contact. We have to face up to the pressures of growing demand, a different not patient, competent consumer and a very challenging financial and global climate. Paul Hodgkin http://www.patientopinion.org.uk/ talked of the immient Eurozone crisis and how this could hit our healthsystem, citizens and society hard compounding the difficult decisions and conflicts which already exist. Mike Farrar @farrarmike of the NHSConfed spoke of the NHS being a supertanker heading for an iceberg.
  • Citizens are part of the solution not simply passive consumers of health. The settlement between citizens and the health system, competent consumers and health professionals needs to change and become fit for the 21st century. Sophia Christie has written an excellent publication with the NHS Confederation which articulates why there needs to be a new relationshiphttp://www.nhsconfed.org/Publications/Documents/Personal_experiences_280212.pdf. Altogether Better www.altogetherbetter.org.uk have also written a joint publication with the NHS Confederation which shows just how that has been done at a community level through the Community Health Champions Model. http://bit.ly/NBPBXL

Bringing all three of these messages together Information and technology is a huge gift to the NHS that we need to embrace, not as the end output, but as the rich tool for achieving great things within health. However, there is one huge caveat, citizens must be mobilised and engaged in the developments or it will, at least, be a missed opportunity and, at worst, be a failure and waste of resource.

The best case scenario from my perspective would be that we brought active citizenship as an equal partner into information and technology developments. This could mean:

  • people to be involved in co-producing new assisted technology
  • volunteers in community be involved in marketing and supporting members of their community to use telehealth/care services
  • the conditions be created for new social networking opportunities which connects citizens with each other and the health system
  • that collaborative clinical technologies involved the patients they are being developed to help support
  • and most importantly to me that health’ communities are supported to build social capital, relationships with each other to ensure that technology does not exacerbate inequalities and increase isolation and the well known health challenges that these outcomes would bring.

All in all, an inspiring few days, although I really, really hope that this time next year all three of these gatherings have created the conditions where active citizens in health are able to join the discussions and tell their own stories.

On that note Lisa, an amazing Community Health Champion did go along to the first event (although was one of few and has actually recently got a job supporting new Champs- congratulations Lisa). I know Lisa so had already heard her story up to the point where she became a volunteer CHC after her GP connected her a the local community organisation. Three years ago she used to self harm regularly (see http://understandingdifference.blogspot.co.uk/2011/05/altogether-better.html for that part of the story) but what she told me this week was that she has a job, her self help group have been commissioned to replicate 8 times, actually the ‘systems’ counselling service (she was refered to and never received) now refers people to her group and she is supporting people who self harm through a social networking group reaching as far away as Singapore, oh and she worked out that she has saved the NHS £200,000!

Think that says it all! It gives me inspiration to do what I can to help create the conditions for people to have more power and control of their own health and the health system through information and technology.

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