Research from the Patient Perspective

As a patient, what would you like to see as a research study? 

This isn't an easy question to answer because most of us don't really have much of an idea what goes on in research studies. Even when we are participants in clinical research, patients often never hear what the results are and, according to the many experts I heard speak at the PCORI Annual Meeting, it can take years before research results have any effect on clinical practice. Results are published in medical journals which are not easily accessible by patients, either because of the cost or because the technical language makes it impossible to understand.

PCORI or the Patient Centered Outcomes Research Institute is trying to change this. It isn't an easy task as it is asking for a radical change in how scientists and clinicians look at research. They are insisting that researchers include patients in every aspect of this process, even - and perhaps especially - in deciding what is important to study. What outcomes matter to patients?

On the last day of the meeting, I attended a session titled, "Applying the Patient Experience to the Research Process". This was a learning lab session and a process in how to figure out how we can answer the first question. As a patient reviewer for PCORI, it also helped me to understand better how I can approach reading and critiquing funding applications.

The presenters, Suzanne Schrandt JD, Deputy Director of Patient Engagement at PCORI, Jaye Bea Smalley MPA, and Lisa Stewart MA, Engagement Officers for PCORI, first assured us that we, as patients, are experts. We have been living with chronic health challenges and know better than anyone what changes we would like to see happen. Then, they asked us to reflect on those experiences we've had with illness or injury which have been very powerful, both the good and the bad.

We then chose one of those experiences and tried to formulate a question around it. What are the key points we want to make? What are the details you want to get across? How can we create a narrative to illustrate why we feel this is important. 

Another presenter from earlier in the week, Chip Heath, talked about how to communicate in a way people will listen and understand. The best example was about nutrition. I loved this one! He showed us an educational slide talking about the amount of saturated fat in whole milk compared to the recommended daily allowance. It was okay, but it was really just numbers. Then he showed us another slide with simple graphics showing us that the amount of saturated fat in a glass of whole milk is equal to the amount of saturated fat in 5 pieces of bacon. 

The moral of this story? If you're going to have saturated fat, would you rather have a glass of milk or 5 pieces of bacon?  This is something people will understand and remember. (Not that anyone is suggesting bacon is healthy. There's a few other things to take into account.)

So, back to the first question, what would I want to see researched? 

One of the most challenges aspects of managing my Parkinson's disease has been medication. How do we find a balance between managing our health and avoiding the inevitable issues of the less desirable effects of drugs? Would it be possible to have a comparative study which would look at patients who are having more symptoms or more off times and divide them into groups: one group of patients would have their medication increased, another group would start an exercise regimen instead of the increasing the meds. Another group could start a conscious, healthy diet (study determined) instead of the increase. Another group could do both the exercising and the diet instead of increasing meds. 

The ability to manage symptoms without increasing medications would be a huge positive outcome as far as I'm concerned. 

I have no idea how feasible a study like this would be, especially when it comes to scientific merit and protocol, but it's worth putting these ideas out there. The wonderful, awesome, exciting thing is, now someone will listen! PCORI is interested in our ideas. For more information on submitting ideas, go to PCORI's website - Suggest a Patient Centered Research Question. They'll even help you learn how to do this. 

PCORI doesn't just talk about patient engagement. The inclusion of patients in every step of the research project is required for receiving funding. PCORI includes patients as well, in every part of their work. As a patient reviewer, I know my voice is heard and considered as important as the voices of the scientists and clinicians. They respect us as experts.

They also made sure to include patients in their Annual Meeting. I am so glad I was able to go and am grateful for the scholarship I received. It was educational, exciting, and reassuring to see the direction this field is going. It was amazing to hear speakers talking about projects where this is already happening. The organizers kept the meeting moving and lively. They took good care of us.

We even had bacon for breakfast.