The growth of the e-Patients movement may be experiencing surprising strength from a completely unexpected source, with many people growing the ranks of the movement because of the greatest motivator of all: saving money.
Clay Shirky’s cognitive surplus observation, made in April 2008, keeps on resonating as I see more and more evidence that, contrarily to what some naysayers would want us to think, the internet and social media are fundamentally important to a significant percentage of Americans looking for answers about wellness or sickness, health or disease.
In his speech Shirky noted :
"The value in media is no longer in sources but in flows; when we pool our cognitive surplus, it creates value that doesn’t exist when we operate in isolation. The displacement of TV watching is coming among people who are using more of their time to make things and do things, sometimes alone and sometimes together, and to share those things with others."
Last Friday, the Wall Street Journal published a sobering article about a completely unexpected situation developing this year: "Patients Cut Back on Prescriptions, Doctor Visits Amid Tough Times".
I have always heard that health care is one of the very few recession proof areas and that stocks from companies whose businesses are mostly in the healthcare realm are great safe bets when the markets go south. What a surprise to read "last month Walgreen Co. Chief Executive Jeffrey Rein said the U.S. is experiencing the "tightest prescription market" in his 27-year career, as more cash-strapped patients skip their pills or take half doses."
I also learned that the "a recent analysis of claims from 250,000 people in several dozen mid-Atlantic employer health plans suggests even people with coverage are cutting back on care. The study, conducted for The Wall Street Journal by research firm D2Hawkeye, found that a number of preventive or nonacute areas of care saw declines despite little change in benefits or employee cost-sharing."
Sure the stories in the article sadly show that many people are just delaying care to save money but I can’t help thinking: "is the economic downturn one more reason for people to turn to the internet and social media to help them deal personally, as e-patients usually do, with non-essential medical problems?"
The explosion of available social media to help individuals obtain responses to many of the questions they have can surely have a deep impact in lowering the number of unnecessary visits to doctors’ office. Add to the mix the explosion in the cost of transport and all of a sudden you have a real accelerant. As a doctor interviewed in the article brutally admits: "It’s hard to get people to follow up when they’re having to decide between the gas bill, the electric bill or deciding to come in and see the doctor."
Previous studies have tended to demonstrate that informed patients can be less compliant. Patients trying to limit their financial exposure seem to be clearly less compliant. Or are they just getting smarter? This promise to be a great academic debate for years to come! But the shock of the current financial turmoil, called this week by former Federal Reserve Governor Frederic Mishkin "worse than what was felt during the Great Depression" can only have an accelerating function on the phenomenon covered by the Wall Street Journal article.
The American public is known for its incredible resilience. I am convinced that many more people will be using the panacea of Health 2.0 resources as a natural solution to this crisis of epic proprotions. And, as we all know, once new users discover the benefits of good online medical resources there is just no way back. It is very conceivable that many of the new companies offering access to new tools, from PHR and automated compliance agents to social networks, are going to significantly benefit from these traumatic events. After all many pundits are already saying that real innovation comes easily in tough times.
What do you think?
Gilles Frydman is Founder & President of the Association of Cancer Online Resources, the largest online support group for cancer patients. He also blogs regularly at e-patients.net, where this post first appeared.
I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.
If millions of people know a few things about a given illness or remedy, and you aggregate what they know together, it’s hard to think of what you’ve done as creating a cognitive surplus. Sometimes what you are doing is pooling ignorance or providing an echo chamber for web-based urban mythology. Crowdsourcing is not the same as evidence based decisionmaking.
Why Health 2.0 is important is that it is aggregating communities around specific problems (cancer, diabetes). I think some of the above observations are important here, e.g. that people might be using these communities for things like triage, reassurance, dissonance reduction, searching for non-medical pathways as an alternative to unpleasant or risky clinical interventions. It’s all good. It’s far from clear, however, that people using Health 2.0 to find alternatives to taking their meds is good for anyone.
The fact that people cannot afford medical care may mean that some unnecessary care won’t happen that would otherwise have damaged patients; it may also mean that people stop taking their insulin, or beta blockers, or statins, and end up in the emergency room.
The idea that the doctor/patient relationship somehow becomes less important because you have all this collective searching is difficult to swallow. I still want someone I know personally and trust to help me make the important clinical decisions. It’s what I’m paying him or her for. What you get for free is worth often exactly what you pay for it.
there is growing anecdotal evidence that serious social networks are helping large numbers of patients to manage many aspects of their disease, even and maybe even more when their medical history is complex. I have witnessed, over the last 15 years, one aspect of medical online communities that doesn’t seem to have been studied: the groups fulfill a triage function.
Many members of these groups ask a question about a adverse event that suddenly affects them or a loved one and then ask if it warrants going to a doctor. For example, we know of many cases where the advice given back by group members of the L-T-SURVIVORS community DEFINITELY saved a life.
L-T-SURVIVORS is a community of very long term survivors, mostly people diagnosed in their childhood with lymphoma. Most of them received the same treatment and 30 or 40 years later develop medical problems directly related to these treatments. This is an area where most doctors have never been trained and really are clueless ( a statement of fact, not a negative remark about doctors). The group was started long ago by a visionary patients who realized, long before the National Cancer Institute did acknowledge the seriousness of the problem, that long term survivors of cancer have to deal with many delayed adverse events resulting from the treatments who saved their life.
Because the joint wisdom of the group members recognize a symptom of a medical problem known to them but unknown to the vast majority of clinicians, they are able to direct the patient asking the question to the ER and inform them of the life-threatening situation they find themselves in.
Conversely I have also witnessed many exchanges where people asking of they need to go to the hospital are reassured and given the means to address the problem at home, saving much time, energy and money, while freeing some time of a doctor who in the first place had no valid clinical reason to see the patient. This is the kind of effect that can have a deep financial impact at a meta level. Yes, each case belongs to the long tail, but the combined effect at a regional or national level may not be insignificant. For example, I wouldn’t be surprised if similar stories develop for people suffering from the large chronic diseases. Amy Tenderich, do you have anything to say?
I agree with Rob Ricketts that the largest cognitive surplus rests with patients. When my late husband was diagnosed with liver cancer, I sought out as much free information as possible. With doctors hesitant to share their thoughts and expectations, I learned to rely on my research about what they were recommending to tell me what they thought was happening and what they hoped to accomplish. I used the information found on big pharma sites to weigh suggested medications and their side effects so my husband could make his decisions with as much information as possible (not to mention that what the doctors wanted to prescribe told me how treatable they thought my husband’s disease was). I also used information found on medical school sites, patient forums, and support group sites to be able to “forecast” our journey and help prepare my husband for what might come next. Until I began using Health 2.0, we often found ourselves anxious, ill-informed, and unprepared. That is a state no patient should find themselves in.
Interesting points. I see the real opportunity related to cognitive surplus as one surrounding “self care”, social support, and lifestyle changes that can have a dramatic impact on health and outcomes. It is difficult to imagine a large opportunity on the high end (either dollars or technology), around complex cases, etc. Certainly there are examples of individuals self diagnosing rare conditions more effectively than MDs with what is available on the internet, but I would expect that to be a long tail phenom, not the core opportunity.
The economic downturn will weaken safety net programs, hurt access to to traditional medicine, and result in more challenging economics for the health care industry as discussed above (fewer prescriptions, etc). The silver lining would be if this environment motivates individuals to take greater ownership of their health, to be proactive and educated around self care and compliance, to seek not just preventative ‘treatments’ from physicians but also changes to live a ‘preventative lifestyle.’
My point is that I believe the largest cognitive surplus rests with patients, not caregivers.
I think most people who use the internet want information for free. People who are financially strapped and “flocking” to the web for health info won’t be spending much to support those sites – unless the sites seem to offer self diagnosis and medication at less cost, or costs that can be made incrementally. But is this, in the long run, less expensive to the individual or the system – depends on the illness? That said I use the WWW for natural health information and attempt to link health problems with food or nutrient deficiencies, with a “try it (can’t hurt) and see if it helps” approach. Is this any different than docs giving meds who are also trying to see if it helps but really don’t understand the whole problem? The problem with that approach is that NO drug is harmless and will have side effects. My latest stomach malady was solved using a variety of info sources, including the free interent, after the doc misdiagnosed my problem in classic doc style – relying ONLY on what he learned in med school but not really understanding how the body functions. He presribed Nexium, despite that Prilosec OTC would have worked just as well (or not) and cheaper. My problem turned out to be a digestive reaction to wheat. I went on a glutten free/reduced diet and my problem went away and has not returned. How much money would I have spent in “the system” getting to the same conclusion – if I ever got there because no one in the system was trained to look at a diet link. As usual there is little value for money spent in our healthcare system.