Power to the patient
If you're a health care provider, perhaps you've noticed something unusual: patient power.
Patients have begun to take charge of their health-care environment. They email, they pepper you with questions from their (good and bad) Internet research.
And now, watch out.
Patients are showing up — with press passes — to blog about professional medical conferences. They're inviting themselves to gatherings of health professionals that used to be invitation-only. They're doing their own medical research to force the medical establishment to speed the process.
And they're taking charge of patient education .
Recently, a patient asked Mayo Clinic cardiologist Dr. Sharonne Hayes what could be done to trigger more research about a rare condition called "spontaneous coronary artery dissection (SCAD)."
Hayes advised the patient to seek participants for a Mayo SCAD-survivor pilot study online.
"The study landed 18 participants in less than a week, six more than could participate in this pilot of 12 patients," says an article on MDNews.com, which quotes Hayes as saying, "this was truly patient-initiated research."
"Aggressive patient involvement from the earliest stages of scientific investigation can aid cutting edge research; regulatory obstacles can be overcome and the research process can be expedited," says a National Library of Medicine article about an individual's efforts to get a baboon bone marrow transplant to fight AIDS.
The group " Patients Like Me " has collected data from more than 118,000 people who input their personal medical information — and share it with the world. The site works with ClinicalTrials.gov to make it easier to find a research study that meets your needs.
Patients Like Me conducted a real-time observational study of people who took lithium to treat ALS. Results published in Nature Biotechnology showed ALS wasn't slowed.
But Patients Like Me noted that observational studies, which are not as reliable as double-blind, controlled studies, might be done "faster and cheaper than existing trial methods."
If you're a researcher, be sure to invite patients to serve on your next panel and attend your next conference. If you hold a department meeting, make sure patients are personally represented.
Why? Because it seems to me that patient power is being fueled by social media and online discussion so strongly that it can't be stopped. That, to me, is a good thing.