This blog post was originally published on Trial Mix, Science 37’s blog, and is reposted here with permission. Learn more about Science 37’s approach to clinical research or view the original post here.
Patient-centered research studies — which reduce the burden of participation — allow patients to reap the benefits by working smarter not harder.
As a scientist, I see the value in clinical research, but my time spent as a cancer patient showed me that priorities realign in times of health crisis. I cared a little less about the scientific value of what I was doing, and more about taking care of myself and spending time with my family. I know that clinical research studies do require extra effort from the participants, but patient-centered studies — those that are designed with the patient in mind — can let the patient work smarter, not harder, while still reaping the benefits.
Clinical Research Requires Some Extra Effort
I have lots of wonderful friends, many of whom have participated in clinical research studies, so I asked them to help me understand some of the hardest parts of their experiences. In addition to hearing about the experiences my friends had as adults, I also got some insight from a friend who’d been in a clinical trial as a child, and another whose son is in a food allergy research study now, giving me little peek at how clinical research impacts kids. Aside from the annoying paperwork like consent forms and surveys, here are the top three hurdles they mentioned:
- Time: It’s precious and finite, so all those minutes and hours spent in transit, in waiting rooms, and in exam rooms prevent clinical research participants from going about their normal routine.
- Money: While there should be no additional out-of-pocket cost for medical care to participate in clinical research, there is still a potential financial cost. Several friends talked about the need to pay for parking, miss work, or find childcare for each additional trip.
- Extra procedures: Shots, additional medications, or daily trips to the nurse for kids who take study drugs during the school day complicate a patient’s routine, and extra scans and invasive examinations really take a toll on a person. Beyond that, of course, no one wants to go through the pain of extra biopsies or the anxiety that comes with additional scans.
Patient-Centered Study Design Can Ease the Burdens of Participation
A more patient-centered study design could remove or reduce some of these hurdles. For example, providing extra assistance like patient navigation to connect patients with resources to provide transportation, childcare, or emotional support could reduce the burden. But since closer monitoring helps the investigators learn more from the research, many of these hurdles can’t be completely eliminated.
More Than Altruism: Clinical Research Benefits Participants
While some people look at all those barriers and decide (totally justifiably) that in their circumstances, the burdens of participation are too much for their family, many of the people I spoke with who had taken part in clinical research told me the extra work was so very worth it.
One friend wrote: “Facing that needle every week and working up the nerve to jab it deep into my thigh was the hard part for me…I still wouldn’t trade the experience for anything. That study gave me my life back.”
From another: “(There were) ups and downs, but I’d do them again. I’ve had substantial shrinkage of my tumor.”
A third shared: “The extra biopsies were painful and scary. But I felt like the doctors were watching me extra so it was worth it.”
My friends could see that not only did they contribute to some particularly awesome science, but each of them were able to reap benefits in their own lifetime — either because a pill could replace the need for a weekly self-injection, the drugs actually slowed their disease, or they knew they were being monitored so much more closely than a patient under standard care.
Working Smarter, Not Harder Improves the Patient Experience
While I’m quick to tell you that the increased monitoring a patient receives from all those doctor visits, blood draws, and surveys is vital to the clinical research process, it would be disingenuous to imply that the system can’t be improved.
Investigators need to design each study to obtain the most valuable data and draw valid conclusions. By involving patients in the design process to make the studies truly patient-centric, the research protocols can be written to ensure each study respects the patient experience and reduces the negative impact on a patient’s life. The Science 37 team partners closely with patients and investigators to ensure that trials are designed thoughtfully to minimize the impact on patients and their families, making it easier for them to benefit from awesome science.
We know it’s worth it to participate in clinical research, but we still want to make it less work for the patients involved.
About the Author
Jamie Holloway is a both a scientist and a survivor, earning her PhD in tumor biology from Georgetown University — where she spent long hours researching breast cancer — a few years before her own breast cancer diagnosis. Now living with no evidence of disease after treatment for early stage triple negative breast cancer, she bridges the gap between scientists and researchers as a Clinical Research Advocate for Science 37, and as the Patient Advocate for the Metastatic Breast Cancer Project at the Broad Institute. She works with researchers as part of the Georgetown Breast Cancer Advocates and writes about her personal experience with cancer on her blog Run Lipstick Chemo, and as a contributor to the Cure Magazine community. A wife, mother, runner, and lipstick addict, Jamie shares her story from the perspective of both a patient and a scientist.