Amy J. Houtrow provided a summary of the main messages from the two days of presentations and discussion. She began by reinforcing the message articulated by multiple panelists that people with disabilities face discriminatory forces and multiple barriers to care. Further, such discrimination and access barriers can have serious detrimental consequences to their health and well-being. In addition to disability discrimination, or ableism, disabled individuals often also have other oppressed identities, such as being minoritized (facing racism) and facing classism, including the experience of being unhoused.

As explained by Jonathan Platt on the first day of the workshop, social and political determinants of health, which are the main drivers of health, are the conditions into which we are born, live, learn, love, work, and play. These determinants of health are maintained by mutually reinforcing systems of both opportunity and oppression in the housing, financing, employment, health care, and criminal justice systems. Houtrow noted that although it is possible to make changes to the social determinants of health, such change is hard. In health care, there is often a disconnect between what is provided and what people need to be as healthy as possible.

Houtrow reinforced what the lived expertise panelists explained about how challenging it is to navigate the numerous areas of the health care system and how it feels to try to do so while facing discrimination by health care providers. Houtrow observed, “It was hard for me to hear…that there is incredible disrespect, denial, and dismissal of people with disabilities when they try to access the care they need and that they deserve.” Patients may be dismissed by their providers or deemed to be angry or to be overemphasizing their symptoms. Others may miss an appointment because they do not have adequate transportation or may have some emergency that needs to be prioritized, yet health care providers say these individuals are “no-shows,” which gets incorporated into their medical chart and creates a bias in how they are understood by health care providers moving forward. Similarly, other data that is inaccurate may be incorporated into and then perpetuated in a person’s medical record.

Experts have clearly stated that capturing a patient’s story in their own words is tremendously important, but even then, providers may introduce bias. Houtrow provided an example: “Jane Doe alleges 10 out of 10 pain, saying this is the worst pain I have ever felt in my life, versus, John Doe has 10 out of 10 pain and says this is the worst pain I have ever experienced in my life.” The term alleges in the first sentence introduces bias language into the record. It tells people that the provider does not necessarily believe that that individual is reporting accurately on their pain. Houtrow said, “Bias exists in medical records because health care providers are biased, because systems are biased, because society is biased against people with disabilities.”

Houtrow reiterated what panelists reported in terms of the challenges people face in navigating the Social Security Administration’s (SSA’s) disability determination processes. Some individuals experience data poverty in their medical records, making the determination process more challenging. People who are marginalized often have less accurate and less valuable data in the medical record. They also might have less data overall because of the barriers they experience in accessing care. When people with disabilities are denied the care they need, it is difficult for them to get the information they need into their medical record so they can successfully go through the disability determination process. As panelists reported, it is also hard for them to trust the health care system. This makes the disability community worried at times about sharing their data and may drive them to seek care in places outside of traditional health care settings. The medical system needs to earn back that trust of people with disabilities.

Academic experts, experts who are working in the community, and people with lived expertise shared ideas for change and structural and policy reforms, including incentives and training for doctors; expanding who can do consultative examinations, how they are done, and sources from which information is gathered; and the need to simplify the disability determination process to make it easier for people to go through it. Houtrow noted the importance of this because doctors and other health care professionals feel burdened by the paperwork necessary for the disability determinations. She identified the importance of supporting the work of people working in communities of need as well as the value of having a provider who reflects oneself and one’s culture, noting the need for a lot of workforce development.

With respect to electronic health records (EHRs), speakers conveyed a great passion for collecting data about disability in the medical record and the need to make it easy to collect such data and to have it be accurate and up-to-date because disability and people’s health needs change over time. Capturing the determinants of health in the Epic EHR system can help promote engagement between provider and patient. In addition to making sure providers are addressing someone’s disability needs, EHRs can assist providers in making referrals for other services, such as Meals on Wheels, and by providing potential options for supports and resources.

Disability status may be self-reported as an identity or a demographic characteristic. EHRs can also capture an individual’s functional limitations and the accommodations they need, but there need to be strategies to collect these data prior to medical appointments so patients can have their needs met through accommodations at the time they are seeking care. Additionally, panelists expressed the importance of using tools that are validated, but such tools do not guarantee an accurate reflection of individual experiences. As noted previously, biases can be incorporated into the medical record, and there is a disconnect between how doctors and other health care providers think about the history captured in a medical record and what SSA considers to be objective medical evidence in the health record.

Despite their promises, EHRs also bring challenges. EHR systems differ across health care systems. Not all systems are able to exchange information with one another, although the ideal would be to have HIPAA-compliant interoperability among medical record systems. In addition, some systems cost more than others. Some provider groups, such as federally qualified health centers (FQHCs), have fewer resources to spend on EHRs, which sets up a kind of digital divide. When the patients who are served by these FQHCs are the same people who face oppressive forces and lack of access to the things they need, they face an additional disparity in which even their medical record systems are less robust than the ones that typically exist in academic medical centers. Furthermore, patients with disabilities and other oppressed identities tend to have less access to the patient portals. In addition to language and cultural differences, the portals are not always disability accessible. Such digital barriers can actually worsen disparities for already disadvantaged groups.

New ways of collecting, accessing, viewing, understanding, aggregating, and analyzing health data are evolving, and there may be a future in which artificial intelligence (AI) will help these processes become more efficient and provide analysis of many more pieces of information. Policy can drive behavior in capturing data, and health care professionals need to be educated around appropriate documentation as well as in providing care for people with disabilities.

Houtrow concluded by observing that the most important message is to do the following:

Include people with disabilities. “Nothing about us without us.” Respect the expertise of people with disabilities, listen to them, believe them, and truly engage them. That’s engaging them in the design of, the development of, the implementation of, the evaluation of programs, services, policies, and the like.

Alongside the importance of engaging people with disabilities are the importance of addressing biases and especially of having data to inform processes, strategies, and treatment in a way that helps reduce disparities and improve care and outcomes for people with disabilities.