Towards Patient-Engaged Research

Research is finding answers to questions. Patients have lots of questions.

What is Research?

Research is finding answers to questions. Patients have lots of questions. So why doesn’t research answer patients’ questions? Maybe it’s because patients have not been engaged in research.

Of course patients have always been “involved” in research but mostly as subjects or participants. They haven’t really been engaged as contributors, as designers, as partners, or even as users, and certainly not as researchers.

So if the questions researchers ask are not the ones patients ask, it’s not surprising that the research doesn’t answer the patients’ questions.

How do the patients’ and the researchers’ questions differ?

On one level, the questions are exactly the same. What causes the disease? What are the symptoms? How can it be cured or treated?

But the focus of the questions may be different.

Consider disease cause. Researchers, as “scientists”, may be interested in understanding the biological causes of the disease, such as chemical or physiological changes in the body that may be the result of genetic or environmental factors.

Patients may not care so much about the “root” cause but are more likely to be interested in those causes that can we do something about to prevent, cure or treat the disease.

Similarly, researchers may be focused on those symptoms that are visible or can be seen by x-ray or scans, interpreted with blood samples or tissue cultures, or measured with some other scientific instrument.

Patients are also interested in those symptoms but they may be equally concerned about their ability to continue to work or about symptoms not easily seen or measured, like pain, fatigue, depression or anxiety.

And, of course, while everyone wants to find a cure or extend life, patients and parents are willing to fight for treatments that delay disease progression, improve functioning in real life, or “just” allow patients to feel better.

The good news is that patients are (rapidly) transitioning from being subjects in research studies to becoming partners, from research design to interpretation of findings to utilizing the results in real-life decision-making. Patients are now collaborating on how the research should be conducted, which patients should have access to clinical trials, what outcomes are important to patients and their families, and what do the findings suggest about the potential benefits and risks for patients in real life. In other words, patients are now engaged in asking the research questions, so they will more likely get answers that are meaningful to them.

And with platforms like PRE, patients will also have a place where they can share their research experiences and expand their expertise.