We recently hosted our first-ever #WTFix virtual patient panel – and we were thrilled to be able to welcome patient voices to an online audience comprised of individuals from all over the health care ecosystem. The goal of this panel was simply to serve as a listening session for people to learn more about patient experiences and opinions. We believe that by doing these kinds of sessions, people who work in health care can increase empathy for the people we serve and get creative to develop new and better ideas for our health care system.
There were a lot of great insights packed into the hour-long event, and we’ve captured a few of the main themes from the patient panelists below. If you’re interested in watching the full recording, you can access it anytime by clicking here.
The impact of Social Determinants of Health (SDOH) on patient care and engagement
On SDOH, our panelists had some eye-opening experiences to share. Grayson, a 32-year-old living in Madison, WI, shared how in spite of having multiple chronic conditions, (one of which being potentially fatal if left untreated) they did not see any health care providers from age seven to 21 because of poverty, neglect and insurance issues caused by their separated parents living in different states.
“Growing up in poverty, paying out of pocket was just not an option,” said Grayson.“There wasn’t a system set up to handle that. Now, at 32, I have gotten all the chronic illnesses addressed that started during that time growing up.”
Erron, a 41-year-old living in Covington, GA, recounted his experience dealing with a racist Gastrointestinal provider who “thought I was the dumbest person on the planet simply because of the color of my skin.” Erron went to appointments armed with research, but the doctor refused to diagnose him appropriately, saying his symptoms were all in his head. Insults were ever present, both directly and indirectly. Unfortunately, Erron could not leave the provider due to his financial situation and insurance coverage at the time. This meant that once he was able to get the prescription he needed from the provider, he avoided care and waited until he could find another insurance where he had other options.
Health care is full of hurdles
When it comes to the complications of managing care and costs while juggling health insurance hoops for a chronic condition, Andrew, who is 35 and lives in Virginia, perhaps said it best: “The rules make sense on paper when thinking about the entire system, but it makes no sense down at the individual level.” Andrew does believe that overall people who work in health care have “their hearts in the right places, and they are trying to be good stewards of hospital resources and health care costs, but the big system pictures loses the impact it has on individual people.” With a prescription that costs thousands of dollars a month, Andrew spends a lot of time checking up on his insurance and pharmacy and providers to make sure everything is being processed correctly, and at least once a year finds a bill that was totally misprocessed. “It is daunting to know that we have to double check all of our bills because of how it works.” On a final note, Andrew’s prescription coverage is so critical, it plays a major factor in major life choices like moving or taking a new job.
Grayson, who recently came out as transgender, shared the difficultly they have experienced with switching from a local insurance company to a bigger national company. “When I switched, I was hit in the face with everything being incredibly different, for someone who is looking at top surgery (masculinizing your chest) it was really easy to see cost and providers with my old insurance company, but with my new insurance there is no one spot on the website that shows what that information is, and even if you call the 800 number you are on hold forever.” At the end of the day, they are “missing the hometown, take-care-of-you feel that my old insurance had,” and wishes that there was more from health plan to health plan, giving you access to the same tools that allow you to plan for and budget for care.
Let me pick a doctor I trust!
And, finally, the importance of finding a health care provider that you trust and want to stay with was a big topic. Keisha, a 34-year-old from Cambridge, Mass, living with Limb Girdle Muscular Dystrophy, recounted how on her parents’ insurance she found a provider that she loved and who really understood her condition. Unfortunately, when she reached the age where she had to get her own insurance, she faced the incredibly difficult task of selecting a plan that gave her more resources as an individual in a wheelchair versus one that would allow her to continue to see the PCP she had been seeing for years. “I still haven’t found that perfect [PCP]. The one I have now doesn’t seem to fully understand Muscular Dystrophy…If I could do anything to get back with my old primary care, I would do that.”
Erron said that “being able to pick my own personal doctor is my biggest problem.” He shared several past experiences of not being able to access providers he wanted to see, but today, it seems COVID-19 has created access problems that just weren’t there before. “I do my research I like to see who has a good reputation and experience and who can take care of my issues and, whether they are in network or out of network, it’s my decision who I want to work with. But now I’m being told that anyone out of network I can’t see, even though I pay a little more to have access to out of network providers.” Erron said you have to go with who you are comfortable with and who can help you meet your health goals, and the limitations of his network prevent that from happening.
Plenty more great discussion took place over the hour-long event that give an inside look into patient experiences and expectations, so we can all work to improve health care in whatever ways we can to benefit patients. If you’re interested in hearing directly from Keisha, Andrew, Grayson and Erron on their experiences with health care, click here to watch the full event recording.