Patient-Centered Research | YMyHealth

Molly Sherwood, Director of Research at the Allo Hope Foundation, shares insights on the importance of patient-centered research and how millennials can get involved in shaping healthcare research priorities.

What is patient-centered research?

Molly Sherwood: I would define it as any research initiative that consults with patients for every phase of its development. The Patient-Centered Outcomes Research Institute has great resources about what this really entails. They talk about different levels of including patients in research. The entry way is doing a focus group or having patients join for one phase, which is great. But the pinnacle of what we should be looking for is patient collaboration all along the way. Ideally, patients serve as shared leaders when conducting research, with a patient working alongside a clinician or researcher. That's the dream.

How did you get into the research world professionally?

I wasn't always doing patient-centered research, but I've been doing some type of research since college. I had a biology degree and did my honors thesis on studying the process of evolution through examining yeast in a lab. I also did research in a neurobiology lab with mice.

After graduating with my biology degree, I started working at a preclinical contract research organization, which is a fancy way of saying it's a research center that pharma companies pay to help conduct studies for FDA drug approval. I did that for a couple of years before transitioning to a research consulting firm.

While there, I worked on various projects like studying whether drug packaging would improve patient adherence, conducting literature reviews on medication usage patterns, analyzing electronic health record data, and designing clinical programs for FDA submissions. I got to learn and do a little bit of everything, which helped me grow as a researcher.

What led you to become the Director of Research at Allo Hope Foundation?

It almost feels like it was just a path that unfolded for me. I was diagnosed with a rare pregnancy condition called red cell alloimmunization. Sometimes you can develop antibodies in your blood that cross the placenta when you're pregnant and attack your baby's blood. They can become very sick and potentially die if they don't get the right care.

When navigating that in my pregnancy, I tried to research my condition but there wasn't much information available. I learned more from the patient support group that the Allo Hope Foundation ran than from medical sources. I became grateful and entrenched in that community, which led to my transition to becoming the director of research for the Allo Hope Foundation.

What makes patient-centered research unique and valuable?

In my previous consulting work over eight years, I never once encountered a patient affected by a condition I was studying. No client ever said they talked to a patient advocacy organization or considered what patients were looking for. When you think about it, that's pretty weird—designing whole clinical trials to determine if treatments work without consulting the target population.

For example, when designing a study on a psoriasis medication, researchers might decide that the main endpoint is resolution of visual symptoms in 30 days. But what if I asked a patient and they said, "I don't care about the visual symptoms, I care about how itchy I am, and my symptoms usually take months to resolve, not 30 days." That's the information needed to conduct a meaningful study.

Patient-centered research is valuable because we can ask patients: What affects your day-to-day life with this condition? If you had a treatment, what would you want it to do? What side effects would make you stop using it? What do people need most as a treatment? What's keeping people from getting the care they want? With those answers, we could design studies that are actually useful.

Why should millennials have patient-centered research on their radar?

First, millennials need to know and believe they have the capacity to understand research, even without a background in science or statistics. They can start reading published articles in medical journals—many are free. They should try searching for topics they're interested in on Google Scholar instead of Google to see actual studies.

Our generation is interested in taking things on for ourselves and doing our own research. That's perfect for engaging with patient-centered research. The future of medicine involves patients having access to their own charts and working collaboratively with clinicians. Good clinicians understand that while they manage hundreds of conditions, their patient is managing their one condition and doing all the research on it. Working together is the future of research in medicine.

How can people become involved in patient-centered research?

I want to motivate people to feel encouraged by research. Sometimes people think of research as something that happens far away in the ivory tower of academia without real-life impact. But well-designed patient research can be implemented more easily because patients are saying what they want and what will work for them.

To get involved:

Read research to understand the parameters researchers work within
Look up resources like the Patient-Centered Outcomes Research Institute to see what initiatives are ongoing
If you have an interest in a specific health condition, look for patient advocacy organizations representing that condition
If you're interested in participating in clinical trials as a patient, search on clinicaltrials.gov—it's publicly available and easily searchable

What patient-centered research have you spearheaded at Allo Hope Foundation?

We've done some really cool work. We've conducted survey studies of women in our support group who have alloimmunization, asking them comprehensively about how their pregnancies were monitored, what treatments they received, and how they were personally affected in terms of quality of life and mental health.

This tells the story of a diverse sample of women receiving care across the country, which is valuable because studies from single institutions don't necessarily represent the full patient experience nationwide.

We also just finished a project supported by PCORI where we brought together patients, clinicians, researchers, and industry leaders to discuss our needs. This helped us create a long-term patient-centered research plan for the Allo Hope Foundation.

Part of that plan was developing new clinical guidelines for managing our disease, as existing ones are sparse and not adequately protective of the women and children affected. I'm happy to share that we partnered with a pediatric critical care doctor, and I co-chaired a consensus guideline conference with our executive director—there's that shared leadership we were talking about. We brought together more than 40 clinical experts to create new guidelines that will be published. I can truly say that of the hundreds of babies I've seen die from our disease, almost all of them would be alive if their care teams had followed these guidelines. That's what shared leadership can do.

Why are millennials uniquely suited to participate in patient-centered research?

Our generation really cares about helping other people, which can be very motivating—knowing you're contributing to something beyond yourself. We also have this unique ability to embrace technology, search for information, evaluate evidence quality, and use social media effectively. This sets us up perfectly to find resources and participate in research.

Also, someone who's passionate about their condition or health is a force. You can tell when you're listening to somebody who's doing something because they're passionate. That passion propels people forward.

Why should millennials keep an eye on patient-centered research as they age?

Understanding that we have a role in our health just as much as our healthcare provider does is an important realization. As we age and life evolves, having a fundamental belief that we are partners in our healthcare will serve us well. It's a mentality we should adopt now and carry through indefinitely.

When we consider starting a treatment, changing a habit, or taking a medication, we should look for research that includes actual patient feedback. If we start expecting to see that as the norm and as criteria for making our own healthcare decisions, this patient-centered concept will become the new standard as we age, which is something we should all hope to see.

Want to hear more from Molly Sherwood? Check out the YMyHealth podcast!

Putting Patients First: A Conversation with Molly Sherwood on Patient-Centered Research