LK 130Meaningful use for digital outcasts
Denise Sherer Jacobson is 63 years old and lives in Oakland, CA. She is a writer by trade and serves as vice chairwoman of the Mayor’s Commission on Person With Disabilities. Living with cerebral palsy has not prevented her from getting married, adopting a son and earning two doctorate degrees. Despite her ability to live independently, however, Ms. Jacobson has a difficult time dealing with medical professionals who “frequently make incorrect assumptions about me related to my intelligence, my ability to function independently and about the life I lead,” as she told the New York Times in May 2013. “They assume that because I have cerebral palsy I am not intelligent [and] must live with family or in an institution.”
Health literacy for people with disabilities is a critical issue, having a direct impact on an aging population increasingly reliant on technology to provide fundamental human services. Poorly designed products risk alienating these “digital outcasts" from today's e-health landscape; recent studies indicate that patients with disabilities tend to be in poorer health and receive substandard preventive care. Too few clinical practices provide adequate accommodation for their disabled patients, and payer organizations increasingly deem those with disabilities an economic drain due to their advanced medical histories.
The good news is that we are entering an exciting time in e-health. We exist on the brink of the “quantified self” where clinical indices can be tracked with wireless sensors and haptic interfaces, encouraging doctors to embrace personal devices and achieve meaningful use criteria. From an accessibility standpoint, however, patient-contributed information will be the crucible of proof. Someone who is completely blind cannot detect blood in the urine nor conduct a melanoma self-check without assistance. Many ePHR diagnostic tools remain largely paper-based, and the needs of patients with disabilities are not well communicated among medical staff. “For blind patients it’s nearly impossible to dose medication properly,” says one subject, the blind mother of a sighted child. “A change advertised as being great for the sighted can be dangerous for us.”
It is expected that by 2016, ePHR systems will interface with personal smart phone and tablet devices on a universal scale. With the FDA now having removed consumer roadblocks to medical app innovation, much of the regulatory focus falls upon apps that turn mobile phones into personal medical devices. On paper, this could be a tremendous benefit to patients with disabilities—especially those confined to the home. In practice, the inaccessibility of health IT systems may become just another logistical barrier to equivalency.
In this presentation, we’ll explore the disparities that exist in today’s e-health landscape for patients with disabilities, from lack of online preventive care to inaccessibility of personal electronic records. We’ll discover new methods of engagement through grass roots innovation, and we’ll gain an appreciation for how ambient benefit can be achieved for patients of all abilities and backgrounds.
Kel Smith is Principal of Anikto LLC (including its subdivision, Anikto Health) and a longtime author and practitioner in digital accessibility and e-health.
Named after the Greek word for "open," Anikto (pronounced ah-NEEK-toh) is a design innovation company that removes barriers separating people from fundamental human needs. Anikto’s efforts focus on building real world insights from real world users.
In 2013 Kel launched Aisle Won, a nutrition support platform bringing healthy, affordable food to urban neighborhoods. Within eight months, the first Aisle Won pilot increased food assistance revenue by 580%. Additional pilots are scheduled for 2014 launches in at least four U.S. cities.
Kel is the author of the book Digital Outcasts: Moving Technology Forward Without Leaving People Behind, published by Morgan Kaufmann in 2013. Kel’s presentation credits span over 50 cities in six countries, and his articles have appeared in multiple publications.