PCORnet Blog

The Unsung Role Caregivers Play in People-Driven Research

Valentine’s Day is upon us, but when you are a caregiver for someone, there’s no need for a special day to show your love. For the 43.5 million unpaid caregivers in the United States, unconditional care that goes above and beyond is a constant daily practice. It’s not a stretch to say that these caregivers are society’s unsung heroes. They are the medical schedulers, the insurance organizers, the medicine administrators, and the health care advocators. They often know the answers to dosage and symptom questions better than the patients they support. This deep knowledge makes caregivers an important, albeit often overlooked, resource for researchers.

More on Phelan-McDermid

To learn more about Phelan-McDermid Syndrome and PCORnet’s commitment to effective engagement in other rare disease research areas, check out this story:

Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research 

To shed more light on the caregiver role and how it can improve people-driven research, we talked to Megan O’Boyle. In addition to being a caregiver to Shannon, her 17-year-old daughter with Phelan-McDermid syndrome, O’Boyle is the principal investigator for the Phelan-McDermid Syndrome Data Network, a partner network of PCORnet, the National Patient-Centered Clinical Research Network. PCORI, which was authorized by Congress in 2010, launched PCORnet as its most ambitious initiative to date. As Shannon’s caregiver, O’Boyle navigates symptoms ranging from sleeplessness to seizures and serves as her daughter’s advocate in schools, hospitals, doctors’ offices, and more.

PCORnet: Can you tell us a little background on your personal experience with research as a caregiver?

O’Boyle: When I was first getting my feet wet as a caregiver for Shannon, I noticed there were two kinds of moms: those who dove headfirst into every opportunity to move research forward and those who were overwhelmed with the massive responsibilities that often come with caregiving and consistently opted out. I was solidly in the second camp! It wasn’t that I was complacent about my daughter’s condition; no mom is. We all fight fiercely to give our child the best life possible. I wasn’t interested in research because I didn’t think the outcomes from any study would be helpful to her in her lifetime, and I wanted to put my energy instead toward helping Shannon in other ways. But the Phelan-McDermid Syndrome Foundation persisted, and I reluctantly tiptoed into the research waters. Now, here I am, years later, the principal investigator for an entire research network.

PCORnet: What changed your mind on participating in research?

O’Boyle: It was a couple of things. First, I learned that, contrary to what I initially thought, there is research going on right now that can make a tangible difference in Shannon’s life. I used to think of research in terms of “a cure.” But that’s not really how progress is usually made. There are a lot of smaller steps on the road to a cure that allow us to understand the disease more so we can improve the quality of life for our loved ones. The second thing that changed my perspective was the realization that because Shannon’s condition is very rare (only about one in 10,000 people are affected), there is a much lower awareness and motivation to propel research than there is with more common conditions, such as autism or diabetes. Phelan-McDermid syndrome caregivers are a very small group of people armed with the insights needed to bring about solutions for our loved ones. If we didn’t join forces and make our voice heard in the research community, who would?

PCORnet: How can caregivers add unique value to the research community?

O’Boyle: The value and power of caregivers has been underestimated in the past, but researchers are increasingly seeking these perspectives in research studies. Caregivers bring insights that are different from the patient perspective, but equally valuable. We tend to keep excellent records of our loved ones’ health status. While a patient may be fuzzy on what day or time a symptom occurred, we remember these things in detail. We are also extremely compliant, maybe even more so than patients. For example, I may forget to take my own prescription and think it’s no big deal, but there is no way I would let my daughter miss a treatment. Caregivers also bring a strong sense of motivation to the table. We often feel helpless watching our loved ones suffer. Research empowers us.

PCORnet: What advice would you give to caregivers who are considering research participation?

O’Boyle: Caregivers often don’t realize their own power. I hear feedback all the time from caregivers who ask, “What could I possibly offer? I’m not an expert in this disease. I’m not a doctor.” Even though you may not have gone to medical school, living with a condition day in and day out 100 percent qualifies as expert status. So, I would tell caregivers to not be intimidated by research and to recognize how valuable they are to bringing results to patients. At the same time, don’t feel as though you have to dive into the deep end of research. There are many smaller ways to participate. Even just joining a registry is a great way to help that requires very little time investment.

PCORnet: Any final thoughts?

O’Boyle: The funny thing about being a caregiver is that no one ever sets out to become one. It falls in your lap, turns your life upside down, and at that point you can shape your experience in a variety of ways. I think back now to the leaders at the Phelan-McDermid Syndrome Foundation who nudged me toward research, and I am grateful because it ignited a passion I didn’t even know was there. If sharing my story helps someone else down that same path, I’ll feel like I have paid it forward.


About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.


The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.