HELPING CLINICIANS HELP THEIR PATIENTS

Stanton asked the panelists for their ideas on how to guide clinicians to work within the system to move along that journey to health equity. One thing to do, replied Perret, is to tell clinicians, particularly prescribing clinicians, that by providing information, they are not deciding disability. “Part of the reluctance of the medical providers to provide information is they say ‘I do not want to be the one saying whether or not [the person is disabled],’” she explained, adding that medical training should send the message that providing this information is part of health care, not outside of it. Mitra added that it is crucial for medical education to include disability training and how social determinants interact with disability to affect their patients’ health.

Chin noted that clinicians are just one part of a larger ecosystem that includes SSA, providers, the health care system, community advocates, and others. Siloing the problem—just training clinicians, for example—will not solve the problem if the clinicians are working in a system that does not give them time to do a good assessment of a patient. He suggested taking an implementation science view of looking at the problem as a whole, not as individual, unconnected pieces. Perret said politicians are also part of the ecosystem, because if they are not on board with funding Social Security benefits for people with disabilities and solid clinical assessments, the focus will continue to be on withholding benefits and withholding care.

Warren commented that clinicians need to understand that every person with a disability experiences pain differently and that many people are good at masking their pain. She also called for increasing disability payments and the limit on savings that a person can have to receive financial support, an idea Perret said she supports.

ISSUES WITH THE EHR

Warren also noted that some clinicians gaslight their patients and color the electronic health records (EHRs) in a way that minimizes how a disability affects the individual. Perret added that when making a disability determination, everything the claimant says is an allegation and not evidence, as opposed to what is in the individual’s medical record. For example, if a person with a disability tells their doctor they are in pain, but they are smiling and moving well, the doctor may record what they see as opposed to what the patient reports. Addressing this type of bias that tarnishes a medical record is challenging, said Amanda Price.

Perret said a problem she has seen with EHRs that is detrimental for people with mental health challenges is they now have a checklist of symptoms without elaboration, which does not do justice to an individual’s experience. Stanton agreed, adding that research shows that the same symptoms in two patient populations of different ethnicities will get different diagnoses (Coleman et al., 2016; Schwartz and Blankenship, 2014; Vanderminden and Esala, 2018). “There definitely is an element of subjectivity on the provider end that probably colors the medical record,” said Stanton.

Amy J. Houtrow then asked if the specialists who perform consultative examinations on behalf of people going through the disability determination process are biased in ways similar to other health professions. Chin said the weakness of the current system is that it relies on a review that it is subjective and not transparent. More delineated definitions of the criteria used in these reviews would make the process more transparent. Another approach would be to have a panel of medical experts and people with lived experience making these determinations.

Carolyn Petersen, from the Mayo Clinic, pointed out that there are people who have lived experience with disability who also have lived experience designing, developing, and using EHRs. Perhaps those individuals should be involved in efforts to improve the ability of EHRs to capture more useful information on disability.

INCORPORATING PATIENT VOICES IN RESEARCH

Jonathan Platt asked the panelists how they incorporate patient voices in their research. First, replied Swenor, include researchers with disabilities. Second, partner with people in the community at all stages of a project and provide meaningful compensation. She said that many of her colleagues subscribe to the idea that the experts are the people with diverse perspectives in the disability community. She disagreed vehemently with the view among some researchers that including people with lived experience makes research less vigorous. Petersen did as well, adding,

When we say that a person with a disability and their work are less legitimate because of that disability, we are normalizing a certain other type of experience that trends White, trends male, trends certain gender and sex and sexual experience, and excludes older people, and has an array of other characteristics attached to it. In fact, a person who has a disability and has trained in a research process program brings additional insight that can be applied in the same way that others who have personal characteristics bring perspectives that help them to better develop research questions and expand the field.

Chin said he and his colleagues include full-blown, community-based participatory research in their work. He added that having at least three people with lived experience on an advisory committee leads to better work on improving health equity. “It is clear that the lived experience of persons with disabilities is underutilized,” he said.

Mitra commented that she leads a research center where 50 percent of the team members have disabilities. Her center also involves people with lived experience as researchers on studies funded by the National Institutes of Health (NIH). The last two NIH requests for applications focused on disability and included the need to include the voices of people with lived experience. However, the grants resulting from those requests do not allow compensating those individuals for any accommodations they need to make to participate in the project.