We sat down with Amy Fellows, MPH, a Vulnerable Populations and Vendor Strategist at OpenNotes. Amy is also the Executive Director of We Can Do Better, a Portland, Oregon-based nonprofit with the mission to create opportunities for nonpartisan civic education and engagement, bringing people together who share the values of better health care and health for all. We asked Amy to reflect on her important work in the field of healthcare.
What motivated you to pursue a career in healthcare?
I took one of those aptitude tests in high school, and I scored high in health care and organizational skills, so I chose to get my undergraduate degree in Health Care Administration at Oregon State University. And then for my first job out of college, I worked as a medical receptionist at a non-profit Catholic hospital system. I was appalled to see how uninsured pregnant women were refused prenatal care if they couldn’t pay $600. We know it’s much more expensive if their babies end up in NICU. I couldn’t understand how this policy would lead to healthy births. That’s what got me interested in the policy side of healthcare. So I got my Master’s in Public Health at Portland State University and worked at OCHIN (a HRSA funded Health Center Controlled Network) for my internship. I ended up staying there for ten years, installing Epic EHRs in safety net clinics.
What has kept you motivated to continue working with underserved populations?
I just fell in love with working with these clinics. They were doing the most innovative and important public health work in the country, and I wanted to be a part of that. Often the most creative and courageous solutions to challenges come from communities carrying the most need. It continues to feel important to me to be in the trenches, so to speak – finding ways to support communities who need it most.
How did you get involved with We Can Do Better?
I was doing the Health Policy Robert Wood Johnson Foundation (RWJF) Ladders for Leaders Fellowship when I met Liz Baxter, the founder of We Can Do Better. I had been doing health IT for a long time, and I really wanted to shift into policy work. They had a part-time position open, so I applied. I held that position for a little over a year, and then became the Executive Director when Liz left. That was ten years ago. We’ve made real strides in bringing more transparency to the healthcare systems in Oregon, and OpenNotes has been a big part of that. Our last annual conference on social determinants of equity was the largest yet. So, we’re gaining momentum, and that’s exciting.
How did you get involved with OpenNotes?
John Santa, MD, who was at Consumer Reports at the time, spoke at our 2013 conference that February, and he mentioned OpenNotes. When we got our evaluations back from attendees, there was overwhelming interest in OpenNotes. The We Can Do Better Board decided we wanted to bring OpenNotes to Oregon. In June 2013, we organized a summit of health system, health policy, public health, and other leaders in Oregon and asked Tom Delbanco and Jan Walker to come and introduce the idea of OpenNotes. That fall, with two years of funding from Cambia Health Foundation, we started the Northwest OpenNotes Consortium – a gathering of health system leaders interested in or piloting OpenNotes. We’ve met quarterly ever since, so we’ve been going strong for six years. And now almost all health systems in Oregon have opened their notes to patients.
What factors were most important in achieving such wide-spread implementation?
I think it was critical that we had some early implementers who kept coming to the meetings to share their experience with other systems. It was really helpful for a lot of systems exploring OpenNotes to have colleagues to talk with who had already faced similar challenges or fears. We also had two patients in the group from the beginning, and their voices were important and compelling. It was also great that we had John Santa and Homer Chin involved – two retired clinicians who could speak specifically to common concerns and could empathize with nervous and burnt out clinicians. The consortium in many ways is a testing ground for ideas and solutions, but it’s also a support group for people working really hard to motivate change from within their health systems.
Now, it needs to be said, that while OpenNotes is widely implemented in Oregon, the quality of those implementations is not consistent. In some cases, notes may be technically available to patients, but the health system is not communicating with patients and letting them know that notes are available, or the notes are very difficult to navigate to on the portal. So, that’s the next step – making sure notes are available but also easily accessible.
Why is OpenNotes important for underserved populations?
Paternalism is common in healthcare generally, but it gets even more complicated when issues of race, class, and gender come into play. Many underserved populations have been historically harmed by the US medical system (African Americans, Native Americans, and other marginalized groups). Building trust requires a high level of transparency and respect. Sharing visit notes helps cultivate those things. The research we’ve done so far shows that people in traditionally underserved populations are more likely to report benefits from reading notes than other groups, and since this is a pretty low tech, low cost intervention, it’s easily to implement even for clinics and health systems with few resources.
Can you tell me about your personal experience with open notes?
Having access to notes has been important both for me personally and especially as a parent. And I can see how important it is for other parents as well. I interact with a lot of parents of special needs children. Having access to notes really builds trust between clinicians and parents, especially when you need to bounce between specialists and other care providers. There’s a lot to take in, and it’s important for me to know that the doctor understood what I was trying to express while my child was jumping around and distracting us throughout the visit. It’s a lot to manage, and there’s so much value in just knowing you and your child’s doctor are on the same page.
What achievement(s) connected to OpenNotes are you most proud of and why?
I am most proud of my work with the Northwest OpenNotes Consortium and especially of the role I played collaborating over several years to get my former employer OCHIN to make OpenNotes a default for their over 100 FQHCs and Public Health Departments across the country. Underserved patients deserve transparency as much as everyone else. Patients who have been historically harmed by the medical system deserve the opportunity to have trusting relationships with their providers.
