“Is there anyone else out there like me?”
By Amelia Hood & Ramona N.
This past summer, our research team fielded a survey of breast care patients. The survey was meant to gauge interest in the type of research follow-up that would eventually be included in the de-bi app. As a team, we would regularly review the latest survey responses. Ramona’s response immediately stood out.
“Giving patients access to this type of information could decrease the lethal lag between research findings and actual clinical practice.”We didn’t know her yet, but we knew she was someone who understood what we’re trying to do. We could tell she was already informed on this topic, and we hoped that we would get the chance to talk to her.
Our wishes came true when Ramona attended our very first community event a few weeks later. And we were right– she had a career in nursing education with a focus on health Informatics. As a patient with a background in healthcare, she appreciated the complexity of the Issues faced by our project. Now, it’s December, and Ramona hasn’t missed an opportunity to collaborate with us.
Ramona has come with practical suggestions on how to discuss research with patients. She believes there are serious consequences to excluding patients from knowledge produced from their own samples and sees the potential benefits for all stakeholders if patients are included. She is excited about the app but understands that we’re not just building a new technology—we’re trying to change the culture of research as well. Years of research protocols, built to protect patients’ privacy, have created a firewall between researchers and patient participants. By changing the culture and in turn the protocols we hope to build a bridge across that firewall.
“As a participant, I feel I am moving from the role of ‘lab rat’ to research partner.”Ramona began her journey as a UPMC cancer patient over 20 years ago. She has had a unique journey, including more than one cancer diagnosis. While she has great confidence in her medical team, current knowledge has left many unanswered questions about her long-term prognosis and best treatment options. She is interested in participating in research studies related to her diagnoses and these unanswered questions. On the other hand, the lack of follow-up and access to her own data has discouraged her from participating in several research studies.
“Look at the history of stolen information—especially DNA.”Current biobanking is often limited to just one institution. So, while Ramona’s case may not be totally unique, there may not be anyone else like her at UPMC. Until UPMC would have enough similar cases, Ramona’s samples would not be selected for a research project. She and other patients like her may never have the opportunity to benefit from a research project with information specific to them. By building a virtual, decentralized biobank, we hope to make it easier for researchers and patients like Ramona to find each other and come together as a research cohort, no matter where they live or where they get their healthcare.
We believe patients have the right to know about their data and biosamples and to have a say in what happens to them. We hope to empower patients everywhere to share in the benefits that come from research on their own bodies. We know that when patients work together with other patients and researchers, we can achieve great things.
December 25, 2022