Almost 10 years ago, I wrote a piece for the Washington Post on the optimism around “information therapy,” or Ix: the idea that doctors would give patients not only a prescription for a drug or a referral to a specialist, but high-quality information that they could use to help manage whatever ailed them. It wasn’t a new concept: it used to be that forward-thinking health plans would print up books full of well-vetted, patient-oriented medical information and distribute them to patients. (Healthwise, which paired up most famously with Kaiser, was an early pioneer.)
By 2002, when I wrote my piece, there was a great deal of excitement that the Internet would allow for better and better Ix, going beyond the limits of the printed page or a single book. There was the corollary worry, too, that the explosion of bad information on the web would increasingly put patients at risk. But either way, Ix assumed that patients should be empowered, and that empowerment was likely to be driven by technology.
Now, in 2010, it is clear that patient empowerment has come of age and is likely to be one of the driving trends of health care over the next decade. For this reason, I have finally and belatedly joined the Society for Participatory Medicine, a extraordinary group of health care providers, patients, caregivers and advocates that are determined to make sure that every patient has what they need to play and active and informed role in their own care. If health care in the United States is to get better and cheaper, it will only come in an environment where patients are educated, regardless of their station in life.
But getting the right information to the right patients is harder than it looks. On the one hand, I’ve spent hours writing documents for both the National Institutes of Health and industry that are carefully crafted to target those who are reading no higher than an elementary school level. On the opposite end of the spectrum, savvy “e-patients” are now demanding access to the same information that doctors are seeing (if not more data). And patients at all levels need to beware large tracts of the Internet, where bad information can flourish.
Though their efforts, I believe that the SPM and its members will play a crucial role in helping patients and providers navigate the tsunami of information. I can’t think of a group better suited for the task, and I’m proud to be a member. I hope that I can contribute within the confines of my position in the health ecosystem, by making sure that my clients place a priority on getting patients clear, complete and understandable information.