Q1. Tell me about yourself?
I was an executive in the computer industry when I was diagnosed with my first cancer. That opened a whole medical world that healthy people know nothing about, and as my husband and I learned how little was known and how little had changed at the time, we knew we needed to get involved.
This was in the early 1990s and we learned about a more activist approach from the HIV/AIDS movement as we joined a new group of patient advocates (PAs) and helped gather people across the U.S. to start Patient Advocates In Research (PAIR). PAIR is an informal, international communication network for people from other Patient Advocacy Groups (PAGs) who are interested or involved in health and medical research.
Q2. For the purpose of bridging the gap between patient groups, healthcare organizations, and medical research, you established Patient Advocates In Research (PAIR). Can you give an example of a project or success story that exemplifies how PAIR has helped patients engage in their healthcare and achieve better results?
I’ll give two examples!
First, I was one of the patient advocates who helped get the NCI SPORE translational research program started. As a part of that, we developed ongoing communication at a national level with NCI, while establishing a relationship, then a formal position when asked to create an Advocacy Core in the UCSF Breast SPORE program. This led to the creation of the SPORE Patient Advocate Research Team (PART) Program that trained hundreds of PAs to work with 62 grantees in 24 U.S. institutions and 14 different cancers.
Second, I was also the first patient advocate in any of the NCI Clinical Trial Network groups in 1994 and then brought in more PAs. We developed a training program so they could offer insights into the whole clinical trial lifecycle, from concept and protocol development, to activation, recruitment, retention, to giving results back to trial participants that can lead to better clinical outcomes.
From these and other experiences, I developed a lifelong interest in connecting the dots for all facets of research, from genomics/multi-omics, ADCs and immunotherapies, to epidemiology, patient experience and health care delivery research, to data-driven technologies that can deliver better care to people. This has continued into other disease areas like infectious disease, rare diseases, and others.
Q3. In the healthcare sector, patient-centered research and development are becoming essential. What role do you think patient participation will play in influencing healthcare advancements and regulations in the future?
It’s always interesting to get this kind of “overnight patient-centeredness success” question. Some of us have been doing this for over 30 years now!
One of the best ways to explain it is to remind companies that the end goal isn’t regulatory approval, but rather reimbursement. That means products that benefit people, not just profits. For example, several newer antibiotic approvals were later pulled off the market because they didn’t answer real patient needs and weren’t better than existing medicines (they used non-inferiority designs).
Patients and doctors don’t want just more treatments, they want better ones that create better results (outcomes) for people. Our input helps create better designed and efficient clinical trials by addressing barriers that are inadvertently built into clinical trials, and we help answer important patient questions as well as scientific ones. It takes more planning but helps create successful clinical trials that can reach greater percentages of the patient populations for each disease. It makes good business sense!
Q4. Could you tell us about a project or moment in your career that you are very proud of, along with the lessons you learned from it?
Due to my many research interests and interactions, I’m now integrating important concepts into multiple parts of the research and healthcare fields. A big example is with Diversity, Equity, Inclusion, and Accessibility (DEIA). We have a window of opportunity to put DEIA into action so that it benefits everyone from patients, providers, researchers, government, and company sponsors.
For instance, we ask questions and suggest ways we can build DEIA into the Oncology Research Information and Exchange Network (ORIEN) which covers 19 U.S. cancer centers. They now have a DEIA Task Force to set mutual goals and take steps to make DEIA real for faculty, patients, and providers, including how to gather more diverse biobank samples so we can eliminate more disparities for various communities. The Society for Immunotherapy of Cancer (SITC) also invited me to present patient survey results at their Strategic Retreat, and we incorporated Patient Engagement into their 5-year goals.
In healthcare, I’m bringing all types of patient voices into companies like SimBioSys which is creating a comprehensive AI-driven tool that combines an individual patient’s data into a 3D model for surgical and treatment planning, and aids better shared decision-making with each patient. Influencing health system patient pathways is also making progress.
Q5. What guidance would you give to people who want to be successful patient advocates and change the healthcare industry?
It’s important to learn how research and healthcare really work, and why it takes so long for progress to be made. As we delve into the details, we learn where the bottlenecks are, where incentives are misaligned, and where we can help resolve them to speed things up. It takes time and commitment to work as persistent, long-term partners. Good communication, patience, and not taking no for an answer are also useful skills.
We need to eliminate systemic racism throughout the system, and make sure programs are established to include people from all types of patient and cultural communities. There is a reason DEIA are being discussed at all levels now, and we have the responsibility to make it real to ensure that all patients receive thoughtful care that addresses their diverse situations.
Above all, remember that our primary role is to represent a range of patient needs and issues in all venues, not just your own situation. This means we often discuss things that may be outside our own experience but are important to those we represent. We always advocate for patients and find solutions through research and healthcare, including answers that won’t bankrupt patients and their families.