For those who read this blog regularly, you know the value the Chronic Disease Coalition places in patient-centered advocacy. When it comes to health care, there is no substitute for patients speaking out about the issues that will affect their access to medical treatments.
What is true in advocacy is also true of medical research. Patients, as the ultimate recipients of new medical innovations, often have valuable insights to offer doctors and researchers as studying new treatment regimes.
Unfortunately, some medical research continues to happen without any patient input. That means the new treatments might fail to account for the individual circumstances and preferences of patients, and as such patients could have difficulty finding a treatment that is right for them.
But this is beginning to change. The medical community is increasingly taking note of the need for more patient involvement at every stage of the research process, and several institutions are leading the way.
One such organization is the Patient-Centered Outcome Research Institute (PCORI), established by Congress in 2010. The mission of PCORI is in part to conduct patient-guided research as a means of providing the most relevant clinical data possible to the patient community.
To do this, they have established a number of Patient-Powered Research Networks. These networks, organized for the most part around individual diseases, bring patients and clinical researchers together in one online portal to share personal health information. This data is reviewed by research committees made up of patients and medical professionals who then propose topics and a plan of action. Once research in concluded, it can then be easily disseminated back out to the patient community through these online portals.
This kind of decentralized, patient-centered approach shows real promise and is a fantastic way of getting relevant information into the hands of the people who need it most. Already PCORI has provided research grants to 20 patient research networks, conducting research on more than 150 chronic conditions, ranging from epilepsy to MS.
In keeping with its patient-centered approach, much of the initial research has gone to providing better information to patients about which of the many different approved treatment options for their disease is a good fit. This has led to studies ranging from the efficacy of telemedicine to treat hepatitis patients to which specific biologic drug might be best for people with psoriasis.
Armed with the results of these studies, patients will be in a better position to know which treatments might be right for them. Of course knowing which treatment will work best is of little use when your access to care is denied. As such, the Chronic Disease Coalition will continue our fight to end patient discrimination so that anyone with a chronic illness can take advantage of the patient-centered research now under way.