Diagnostic excellence is challenging––if not impossible––to achieve without true equity. This level of work BY Patients can leave some patients behind. The way current healthcare systems are built and current practices of patient engagement are designed makes it difficult for patients who have been historically marginalized and underserved to feel welcome and to be truly involved if they want to do so.
Despite ongoing efforts, gaps in healthcare continue to widen, particularly affecting vulnerable populations. The gap is ever widening. The patient’s level of medical literacy, general education, current health status, and resources already create barriers to simple access to medical care and therefore thicken layers of exclusion for many of these patients.
These inequities will need to be addressed to further level the playing field and enable patients of all backgrounds to lead research and care in the future. The Centers for Medicare & Medicaid Services has increasingly prioritized the measurement of social determinants of health, recognizing their critical role in health outcomes.54,55 Concurrently, healthcare systems are intensifying their focus on equity, with a growing body of work dedicated to addressing the needs of priority populations. Federal agencies, including AHRQ, have initiated comprehensive strategies aimed at reducing healthcare disparities and advancing health equity.56
The barriers to getting involved with co-design and co-production come from all directions. While some healthcare systems and research organizations are inviting trained patient advocates with established backgrounds to sit on planning and advisory panels, the majority do not. People with full-time jobs may not be allowed or able to afford time off work. Caregivers or parents may not be able to leave their family members.
Patients who are significantly ill may simply lack the mental and physical energy to engage, especially those in survival mode. Circumstances may affect a patient’s ability to evaluate complex decisions and their consequences. Such circumstances include limited English proficiency, lack of housing or adequate employment, addiction or significant mental illness, and dementia or memory loss.
People who live in communities with limited access to medical resources are hamstrung by a lack of choice in their care. For example, many living in rural communities have lost all access to local care. Many hospitals have been shuttered or sites with care that is less financially rewarding have been closed, including pediatrics and labor and maternity. Many willing and able patients report the unwillingness or inability of medical professionals to equally engage, especially in resource-limited environments.
A recent series of workshops identified 21 various typologies of potential diagnostic disparities solutions.57 A few simple steps that have been studied to help reduce disparities include:
- Concordance of race and culture among patients and doctors, which improves the communication of symptoms and the resulting quality and timeliness of an accurate diagnosis.58,59,60
- One-on-one in-person explanations of next steps in the diagnostic process, including checking for comprehension; clarifying tests, their goals, how to prepare, when to expect results, and what those results mean; and providing aid in scheduling and followup of specialists, including helping to arrange transportation.61,62
- Presence of a family member or friend at all appointments to help with memory, comprehension, adherence, and other issues.63,64
