04 June 2013

'Traditional' Research Being Modified

This time I learned something that I was not aware of and while I have seen the acronym in articles, this blog by Dr. Leana Wen lays out information I admit I have not read before from any source. PCORI is the Patient-Centered Outcomes Research Institute, and is a new federal institute mandated to figure out how meaningfully to involve patients in research. How did I miss this – good question, but I sure did.

In “traditional research,” patients are participants or subjects of the study or trial. Their participation is their decision and once accepted can chose to stop if something is not right for them. Under PCORI, patients will have the rare opportunity to help make decisions about what research is conducted, some of the design, and to be involved in the research activity from the beginning. After all, isn't it the patients with the disease that have the most at stake and the largest to gain from research?

Dr. Wen is correct in saying, Researchers not used to involving patients question whether they would be sophisticated enough to understand the research process. Patients, too, doubt whether they have the expertise required. Fueling this is mutual mistrust: will this new patient-centered approach derail existing research? Will patients end up being “used” for some nefarious ulterior motive?”

Have no doubt, some researchers will not work with patients as partners, and may patients may not have the desire to assist in design of a study. I also think that there will be a mutual mistrust, but whether this will derail existing research will remain to be seen. First is the existing research quality research or suspect research? One of the fears I would have as a patient involved in some studies is how I would be treated by researchers. I can envision them attempting to short circuit some areas and then blaming me.

Some of the points Dr. Wen lists do bother me and the first one is whether they approved representatives of patients. Then whom would they actually be speaking for as I suspect it might not be the patients. Patient groups may be okay unless they are not patient controlled. These are my concerns.

Read her blog and enter your thoughts. I have barely touched what Dr. Wen covered. Do I wish I was involved, maybe if I knew some research projects would be done and correctly done, unlike many prior studies. Mainly, I am very thankful for the information Dr. Wen has made more public.


  1. I think there would be a significant segment of the patient community that have educated themselves so deeply on issues important to them that they would make wonderful partners in this.

    1. Yes, Scott,

      I wish I had understood this and what was in store. I would have attempted to get involved. Now I have to wait.