Information Technology (IT) plays an increasingly prominent role in all aspects of society, and National Health IT Week, beginning September 15, offers an opportune time to reflect on how far this field has come in influencing health care. Patients, clinicians, and researchers can all benefit from increasingly sophisticated IT tools. Patient-centered research provides a bridge from health IT to improved care and care delivery.
In barely two decades, many healthcare systems and providers have shifted from paper to electronic medical records, enabling clinical information to flow among care settings and providing patients with welcome access to health indicators via secure web portals. Clinicians tap into electronic storehouses of evidence-based medical information and employ computerized decision-support tools. Researchers rely on IT to identify potential participants for clinical trials, uncover patterns in data collected, and use tablets or other electronic devices to collect data from patients
Mobile devices for consumers already track diet, exercise, and other activities that influence health. A growing number of websites provide information about medical problems and care. Other websites help patients who have a disease in common share their experiences, including treatment outcomes.
PCORI’s Health IT Focus
We at PCORI fully appreciate the enormous opportunities that health IT offers to advance our mission of supporting patient-centered comparative clinical effectiveness research (CER). So to mark National Health IT week, we’d like to showcase projects we support that take advantage of health IT, explore patient and caregivers attitudes toward—and use of—these technologies, and advance them.
PCORI’s greatest venture into health IT is the creation of PCORnet, the National Patient-Centered Clinical Research Network. PCORnet will provide researchers with a large resource of data gathered in clinics and other real-world settings. To foster observational and experimental CER, PCORnet data will be stored in standardized, interoperable formats under rigorous security protocols and shared across the network using methods that ensure confidentiality.
PCORnet is comprised of 29 health data networks, some that originate in healthcare systems and others operated by groups of patients. One patient-led network that is strongly leveraging IT is The Health eHeart Alliance. It employs a wide range of electronic technologies, including remote monitoring of blood pressure and heart rate; mobile apps; online portals; and a state-of-the-art data system. To reach its goal of collecting more data on heart health—from a larger population—than any previous study, the alliance is using social media to recruit participants and will enable them to share their own data as the study progresses.
Many Aspects of Health IT Research
Other PCORI-funded studies are exploring a wide variety of approaches to the use of IT in advancing health and health care:
- Researchers in New York are conducting a national, randomized study aimed at measuring the effectiveness of web-based videoconferencing to deliver specialty care to Parkinson's disease patients who would not otherwise have access to a neurologist.
- An Illinois team is comparing standard hospice care and care supplemented with a set of computerized tools to reduce end-of-life cancer pain. The tools include tablet computers on which patients or their caregivers report pain levels and receive multimedia information on pain management. Hospice nurses also receive the patient’s data and guidance in managing pain medication. All information collected is automatically stored in an electronic database, which generates further information for patients, caregivers, and nurses.
- A Florida team is comparing the impact of traditional informational booklets versus a personalized health information navigator, in which a tablet computer delivers information guided by patient preferences, to help men with prostate cancer choose among treatment options.
- Researchers working with the National Stroke Association are exploring the needs and attitudes of post-stroke patients and caregivers toward mobile technologies that support complex care management.
These projects and others that we support capitalize on the far-ranging capabilities of IT, as well as the close relationships many consumers have with their smartphones and other electronic devices. As our portfolio of studies grows, we expect health IT to play an increasingly important role. We’re excited by the prospect of contributing to the growing evidence base on how IT can optimize healthcare experience and strengthen patient-centered CER.
Greene is an Associate Director of PCORI’s CER Methods and Infrastructure program