Why Patients May Be the Health Care System’s Most Valuable Experts
Audre Wirtanen '16 and L. Tuthall, co-founders of Hyp+Access, a disability-led nonprofit organization, spoke to Newsweek about the organization's effort to become a regulated health care facility, which would offer a more holistic model of care influenced by the lived reality of patients with conditions spanning multiple organ systems.
Reports Newsweek:
"Despite the scientific advances made in health care over the past century, many patients with lifelong diseases such as common connective tissue disorders often spend years searching for solutions. They see numerous specialists and receive multiple misdiagnoses before receiving an accurate diagnosis. As health care leaders search for ways to modernize delivery, a growing idea emerges: what if the people best positioned to redesign health care are those who have spent years navigating its failures?
"Audre Wirtanen and L. Tuthall, co-founders of Hyp+Access, argue that the conversation isn’t theoretical. A disability-led non-profit organization focused on care access and justice for people with connective tissue disorders and overlapping complex conditions, Hyp+Access recently received contingent approval from New York’s Public Health and Health Planning Council (PHHPC) for its Article 28 Diagnostic and Treatment Center Certificate of Need (CON) application, and will now proceed to construct and make the center operational in order to receive this coveted designation, formally recognizing it as a regulated health care facility. However, the organization was not designed by clinicians seeking patient input—it was designed by patients themselves.
“'It’s patients who really built this clinical model that mainstream medicine was too hesitant to touch,' Wirtanen says. 'Perhaps this hesitation stems from the silos that exist in the industry, or because the model fundamentally challenges how the health care business is normally done.'”