For good or ill, the web is changing the doctor-patient relationship. But Haydn Shaughnessy outlines how some believe new social networks on the Internet can be mutually beneficial
While we revered the Internet briefly for inviting us to believe we were all about to get rich, a more sober assessment is it will revolutionise patient-healthcare relationships and the business of staying healthy but not the way we thought it would.
Earlier this week the American Cancer Society (ACS) concluded a three-day National Voluntary Health Association Innovations conference on the use of what it calls social network media in medicine and some clues to the future of healthcare emerged.
Social network media are a part of the World Wide Web. They are, according to experts like Mike Mitchel who heads the futuring and innovation department of the ACS, the tools that patients and doctors will use in future to influence and inform each other.
"We started looking at these things a couple of years ago," says Mitchel, "and we expect most of the things we track to have a big impact within five years. In 10 years' time these will be completely mainstream in medicine."
So what are these things?
The panel shows a small selection: blogging, podcasting, medlogs. Blogging is the practice of keeping an online diary that doubles as a soap box for heartfelt opinions. There are already around 300 blogs published by doctors. Most of these consist of doctors sounding off about their industry and the pressures of their work or commenting on controversies that in the public eye.
Over the past few days, for example, doctor bloggers have written about Bill Clinton's health (one believes Clinton is suffering a serious debilitating disease, possibly HIV or cancer), the Vioxx controversy, and attitudes towards patients.
One of the longest running is http://docnotes.com or Family Medicine Notes. The blog, like many doctor blogs, is indiscreet about where problems lie in medicine, particularly in the errors that take place within the medication system.
Few doctor bloggers as yet blog for their patients but "it's coming soon," says Mitchel, "It'll work better in speciality medicines such as diabetes where there's a daily impact of information. In cancer care we're weighing that up right now."
The ACS has begun to use social network media internally as a way of coordinating its administrative and management efforts, but the purpose is to see what it might be used for in the patient domain.
That's already happening at a small experiment in Whatcom County in the US. The Whatcom Pursuing Perfection project is an initiative to redesign local healthcare as a partnership between healthcare providers and patients. Patients now sit on every committee in the local hospital.
Dr Marc Pierson who led many of the new initiatives established his rapport with colleagues and patients as a blogger. His philosophy, motivation and actions were on the web for everybody to see. "The blog was absolutely effective," he says, particularly in showing people who he was. "It reveals the person,, the heart and the soul" and was an essential part of building the trust needed to bring change about.
The Whatcom experiment makes clear what these new communications initiatives are not. Plenty of doctors, for instance, have gone onto the web to give advice or provide information. Two examples are: www.netdoctor.co.uk and www.besttreatments.co.uk. Each uses a panel of doctors from across Europe to explain the nature of a range of illnesses, prevention measures and treatments.
This one-to-many communications, however, is seen by social network media advocates as the right technology propagating the wrong values. The paradigm is traditional, doctor knows best.
Whatcom County's Pursuing Perfection project by contrast starts from the principle that patients must redesign the healthcare system in conjunction with health practitioners and that the web can be used to focus relationships.
The motto of their website (www.patientpowered.org) is "You Have Control, You Have Options, You Have Help." Developed by patients and doctors it provides a way for patients to communicate their aspirations, or demands, for their local medical system. It follows the principle of many-to-many communications. Healthcare professionals on the project were encouraged to post blogs throughout the redesign process to keep people informed about the transformation.
The world wide web is quietly transforming itself. From an emphasis on electronic commerce and selling products it is becoming a venue where people meet and organise and use their collective power in a variety of novel ways.
The website http://del.icio.us encourages people to post their bookmarks (favourite website links) to the web and to categorise them. It is quickly building a whole new categorisation system for the web, a new type of Yahoo directory, by pooling these millions of contributions and letting users decide on the best sources. Blogging is similarly a vast landscape where a few admired peers become known and trusted.
The philosophy behind these initiatives is that people respond to, learn from and look to groups and within groups they learn better from admired peers than from experts or designated leaders. As an example in the non-virtual world: in late 2003 researchers at the Keck School of Medicine at the University of Southern California studied how schoo lchildren best respond to anti-smoking messages. They compared three different peer influence models.
In one, a student anti-smoking campaign was run by students elected by a whole class; in another student leaders were appointed by teachers; in a third individual students gave, confidentially, the name of the people they wanted to learn from. The student leaders were appointed by individuals who knew and trusted their competence. The researchers report the third system, where groups form around recognised peer figures, seems to work best. It is a principle that underlies network forming on the world wide web.
Its relevance to medicine? The means of communication are changing, making it possible for everyone to have their say, like in Whatcom, and for the burden of decision-making responsibility to be shared. The future of medicine perhaps lies with these new networking ideas. The technology is with us.