Power to the people?

There's a lot of talk around about using technology to improve healthcare - making more information available, giving patients a voice, helping them manage their care by making patient records accessible online, and it's thowing up some real key issues.  Empowering patients to have more knowledge about their conditions, more information about the services they receive, to have more choice, appears to a step in the right direction, but what about the implications?  A lot of the issues are around power and who is in control - the public has access to more information than ever before, and this all works against the paternalistic model of care.

We are starting to see a real power struggle, between those who have traditionally controlled healthcare (clinicians, GPs) and those receiving it.  For a number of years there's been a recognition that expert patients, those with a good understanding of their condition, visit their GP less often - in 2005 the Department of Health launched the Expert Patient Initiative.  At the time only 21% of doctors were in favour of this approach to supporting those with long term conditions like diabetes, arthritis and Parkinson's, there's still a considerable number out there who think patients "do not have wisdom but follow prejudice, hearsay, and urban mythology" (Ray Jones).

Patients are being encouraged by the government to take control of their care, the internet has supported a new phenomenon, patient opinion leaders, and expert patients are becoming more and more common, as this post in HSJ indicates "People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community." (Jane Sarasohn-Kahn of the think tank THINK-Health and author of a report on health 2.0).

This power struggle is becoming a major issue in the US.  According to Dr. Robert Lamberts, an internal medicine physician and medical blogger in America “Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified.”  “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

Sharing information is driving the shift in power.  Patients have a voice and have access to others stories about their care, but is anyone really listening to them?  Here's the real issue - technology is just an enabler, it supports change and improvement and innovation, but it can't make it happen.  Without the ability for people to make it happen, it won't.  Throwing money at technology is not the answer.  Technology can only go so far, it needs a real, adult conversation between patient and doctor and the ability of staff to make changes without being stuck in a bureaucratic loop.  Patients are changing and starting to take control, those working in the NHS need, in my humble opinion, to release some.