From e-patients to all patients

by Urmimala Sarkar, MD MPH

As a primary care provider practicing in the safety net, I work with incredibly diverse patients with chronic illness. My patients have a wide range of beliefs and preferences about how to best manage their health. I believe their varied perspectives, if more widely shared, could meaningfully improve health care.

I also do research on health information technology, and in that sphere I have listened to talks and spoken with many “e-patients.” The exact definition of “e-patient” varies. I understand it to mean an empowered, engaged patient who participates actively in his/ her care and uses the internet to facilitate that participation and engage with peer communities. There is no question that e-patients have transformed the conversation about patient empowerment. What strikes me is how little the e-patient movement looks like the patients I serve. I would love to see my diverse, low-income patients, cared for in safety-net health settings, with varying degrees of technology comfort, benefit from the revolution in health information technology. A key strategy to get there is to include perspectives of patients with limited health literacy, educational attainment, and English proficiency in the e-patient movement.

E-patients’ advocacy for data transparency has been critical to efforts to ensure patient have access to their health data. I believe it’s time to take e-patients’ advocacy even further. I agree that medical record data belongs to all patients; I think the next step in this movement is to ensure that it is not just data, but relevant and comprehensible information. Even highly educated patients and families can be overwhelmed reading medical records, and health literacy limitations are disproportionately prevalent among those with chronic illness and those in the safety net. Similarly, the millions of Americans with limited English proficiency deserve access to digital health information that they can understand.

If the digital health information we provide is more accessible, then perhaps we can do a better job with patient engagement tailored to individual preferences and needs. While e-patients have sought opportunities to engage with all aspects of the health care system, I am often searching for strategies to enhance my patients’ engagement in their illness and their care. It is time to acknowledge that there is a spectrum of patient engagement, and that we should be developing approaches to information that respond to patients’ different preferences, needs, and abilities. Technology is a powerful tool not only to share data, but to facilitate communication. Let’s use it to improve the health of all patients.