Accessing More Holistic Health Data Is Vital for Understanding COVID-19

More innovation efforts are needed to expand the collection of health data.

Perhaps the most brutal impact of COVID-19 is its enduring effects on certain patients. According to research published in the Journal of the American Medical Association, approximately 10% of COVID-19 patients have long-term symptoms of the virus. Described as “long-haulers,” these individuals are patients who have experienced the virus’ symptoms — from fatigue to loss of smell — for more than four weeks after they’ve been diagnosed with the virus.

Researchers are just beginning to understand the long-term effects of COVID-19, and it is still unclear how long these symptoms will last for some patients. With so much mystery and uncertainty surrounding the virus, medical professionals need deeper and more expansive data. Thus, some are turning to patient-reported outcome (PRO) data, which provide a more holistic picture of long-term COVID-19 symptoms.

Patient-reported outcomes are self-assessed, health condition status reports conducted by a patient without the interpretation of the patient’s response(s) by a clinician or anyone else. They allow assessment of patient-reported health status for physical, mental, and social well-being. Collecting high-quality PROs is vital to understanding the complex needs of a patient. Some of the benefits of using PROs include:

  • Tracking of outcomes, health, and well-being longitudinally
  • Supporting and improving shared decision-making
  • Identifying patients for registry-based research studies and clinical trials

Like in many other areas of healthcare, there have been efforts to digitize the collection of these important data. In 2018, the LA-based advertising firm Sensis helped launch the Step Up App Challenge, sponsored by the Agency for Healthcare Research and Quality (AHRQ), part of the U.S. Department of Health and Human Services, to help health professionals better access patient-reported outcome data.

The AHRQ Step Up App Challenge called upon participants to develop a user-friendly application that simplifies the process of collecting, interpreting, aggregating, and sharing patient-reported outcomes data related to health outcomes in the ambulatory care setting, such as a medical office, a dialysis center, or a hospital outpatient department.

The winning app was PRISM — Patient Reported and Insight System from Minnesota. This application was designed to enhance the quality of clinical discussion between healthcare providers and patients, allowing for continued patient engagement beyond the clinical setting. The application builds on the successful use of paper-based PROMIS (Patient-Reported Outcomes Measurement System) measures at the HealthEast Kidney Stone Institute but enables patients to use a convenient mobile app, instead of paper.

More innovation efforts like PRISM are needed to expand the collection of health data. The ability of mobile applications to provide a safe and quick way for patients to report symptoms is especially key during pandemic times. PRO data can be better leveraged in the ongoing fight against the COVID-19 pandemic to deepen our understanding of the longevity of the long-term symptoms of the virus. As the pandemic endures, and new variants emerge, we need a more holistic and comprehensive approach to understanding this complex and often fatal virus.