Patients reveal where primary care excels, falls short

At this year’s virtual Primary Care Collaborative Annual Conference, patients discussed their health care experiences and what efforts are needed to improve primary care in the United States.

Sinsi Hernández-Cancio, JD, vice president for health justice at the National Partnership for Women and Families, said the goal of the discussion was to “talk about the critical, central piece to redesigning the health care system in ways that will help everyone, that will achieve the maximum possible help for every single person in the country — and that is centering the patient perspective.”

Cancio was joined by panelists who are familiar with the current state of U.S. primary care, both professionally and personally as patients.

Jane O. Ebot-Bish, PhD, a senior adviser at the Center for Government Excellence at Johns Hopkins University, discussed how her delivery — despite her experiences working in maternal and newborn health research, having two doulas, and presenting to a top primary care facility — led to both a stroke and postpartum depression that may have been prevented or ameliorated through counseling or screening on the part of primary care clinicians. She discussed how these experiences highlighted racial and ethnic disparities in maternal mortality.

Jamie O’Conner, an outreach coordinator at Family Voices of Minnesota, brought her experiences as a professional who works to advocate for and support families of children with health conditions, as well as a mother of a child with a rare genetic condition who requires both primary care and numerous specialists.

Martha Gaines, JD, LLM, distinguished clinical professor emerita and director emerita of the Center for Patient Partnerships at the University of Wisconsin Schools of Law, Medicine, Nursing & Pharmacy, discussed her take on patient needs through her own experience as a patient who was misdiagnosed with an ovarian cyst that was ovarian cancer, and later became metastatic due to a procedure to remove what her OB-GYN thought was a cyst. She later went on to create the Center for Patient Partnerships to highlight the importance of patients’ role in health care through education.

What primary care gets right

Gaines said that one aspect of care that primary care clinicians are getting right are video telehealth visits.

She said that while these visits are not suitable for every clinical situation, they are “a hopeful push that the pandemic required to figure out how to get care to patients in a more convenient and accessible way.”

O’Conner agreed that the use of telehealth visits has been beneficial, stating that her institution has “used telehealth for primary care in a way that we haven’t in the past.”

She added that her daughter’s PCP has used telehealth visits to provide their family with personal information on how the novel coronavirus would affect her, and other non-politicized information about the virus, and offered solutions to balance both her and her family’s mental health.

However, she noted that in addition to telehealth visits, her family has had in-person visits for primary care, urgent care and emergency care during the pandemic.

“The measures that have been taken to keep everyone safe and healthy and not exposed [to COVID-19] have been very impressive, so I think they’re really getting that right,” O’Conner said.

She said that she encourages families to call their health care providers to learn what preventive measures their facilities offer, and to continue to present for preventive care visits.

“Go to those regular appointments, because they’re doing a great job and we know how to stay safe,” she continued.

Ebot-Bish added that “if we’re really going to take focusing socioeconomic disparities and racial/ethnic differences in health access and health outcomes [seriously], we need to look at these different ways of providing care.”

Building trust between patients, clinicians

Ebot-Bish noted that her perception of primary care overall is that it is “missing the mark when it comes to their Black and brown patients.”

She said that in addition to racial/ethnic disparities in mortality outcomes, there are also disparities in “near misses” — or patients who nearly died and experience long-term health effects.

“This is really because there’s this initial assumption that Black and brown patients are not sophisticated consumers of health care, and therefore they are not receiving adequate quality of care,” she said, adding that when patients of color begin to advocate for themselves, “they are deemed as threats.”

For instance, Ebot-Bish noted that when she questioned why her blood pressure machine went off while she was hospitalized for delivery, her postpartum practitioner turned off the machine.

“There is an issue that is going on with listening to the patients, but it is different by race and ethnic background,” she said.

Despite her education level and the fact that she is a “key consumer,” Ebot-Bish said that she and people who look like her are “not being advocated for in that space.”

Gaines, on the other hand, said that too much trust in patients on the part of physicians can also lead to problems.

“Being perceived as a privileged, white health care advocate, I sometimes go into my doctor’s office, and they’re like ‘what do you need, what can I do for you,’ so it feels like an abdication of expertise,” she said.

When asked about methods that work for communicating with patients about health care and building trust, Ebot-Bish noted that a wide body of research shows that community groups can be effective at creating social and community change. The COVID-19 pandemic also revealed that addressing health at the community level is effective.

“Let’s ride that train, and let’s keep making sure that we are using our community groups, our community health workers to keep spreading the message, and through those spaces, find out what the patients’ needs are, and how to communicate with the patients, and meet patients’ needs where they are,” she said.

Ebot-Bish stressed that in health care, equity “holds everything together, it is the foundation — without it, we will keep seeing these gaps, we will keep seeing these disparities, and we will not have that change.”

Coordinating care

Gaines said that clinicians in the health care system are pressured by time and money to push patients through quickly, and it’s often left up to patients to make the most of their time with their physicians and coordinate their care between primary care clinicians and specialists.

“It becomes our own to coordinate and our own to solve, and that takes you back to [Ebot-Bish’s] point about the disproportionate impact on people who don’t have access and don’t have privilege, and don’t have that kind of permission from the culture to move through society asking for things,” Gaines said.

O’Conner, the parent of a child with 12 specialists, said the responsibility for coordinating care between specialists and primary care clinicians often falls to the family.

“There’s a real disconnect in conversations between specialties and primary [care],” she said.

For instance, she said that her daughter was recently hospitalized for bacterial pneumonia, and even though she asked hospitalists and her daughter’s PCP to discuss the best options for her daughter’s care, the conversation never took place.

“On both sides, the status quo was ‘we’ll read the report and we’ll follow up with you later,’ so even though I was asking each of them to do that, it never happened,” O’Connor said. “And that certainly is the case when we’re talking about specialty care as well — it feels like they’re reading reports, but there’s not a conversation and a collaboration where the family is also a part of that.”

However, O’Connor said that after her daughter’s open-heart surgery, specialists and the nurse who cared for her met with the parents to have a conversation about her care. It is this type of communication that is needed to both build trust and to coordinate patient care.

“What means you use in each family to coordinate care is going to be dependent on the family,” she said. For instance, she noted that the COVID-19 pandemic has created an opportunity for these types of conversations to happen virtually.

“I know that’s ideation, but I saw how well that worked in the hospital, and I would love to see us [being] able to do that,” O’Connor added.

Takeaways for primary care

Gaines emphasized that a “critical partnership” in health care is between physicians and patients, and that the only way to create meaningful change in the health care system is through “the will of enough people coming together to say ‘no — this isn’t working for us, this isn’t working for them, this isn’t working for anybody except the people who are gaining profit from the system.’”

Therefore, she encouraged primary care clinicians to “partner with their patients, to trust their patients, and to come together with those communities and drive the change we know we need to see.”