With all of the online resources and growing social media outlets, many patients are finding it easier than ever to “self-diagnose,” or at least come up with something that they think is the answer for their ailments. It is also easier now to find patient support groups and disease advocacy groups to join.
An article in The Atlantic by David A. Shaywitz reviews some of the interesting developments in patients and patient advocacy groups driving their own research, the research agenda of others, and potentially even regulators and payers. For example, The Myelin Repair Foundation (MRF) actually executes some of its own translational research, and “efforts by Jamie Heywood’s exceptional initiative, PatientsLikeMe, initially focused on ALS, a condition afflicting Jamie’s late brother, but has now expanded to a broader array of medical conditions.”
The article also points out the fact that patient groups may be facilitating the research of new therapies as well as making the product’s probability of success higher. With large patient advocacy behind the therapy, the risk for drug companies who take that development path may be less. But there are some downfalls to this notion, like the concern that conditions such as Alzheimer’s, although highly invested in, are outside of patient group’s understanding, as well as the concern that diseases that kill quickly are less likely to gain a patient advocacy group.
To read the article in The Atlantic entitled “Will Patients Bear the Burden for Developing Their Own Treatments,” click here.