Electronic Health Records
Dozens of PCORI projects make use of data from thousands of patients, combining and analyzing the data using sophisticated computer programs while protecting patient privacy and confidentiality. Among these studies is one that is using information already collected on nearly half a million people who were treated for stroke, in hopes of determining which poststroke treatments provide the best outcomes. Another project combines data from 15 sites served by the Indian Health Service, with a goal of improving health outcomes among American Indians with diabetes and cardiovascular disease.
PCORI’s most prominent HIT-related initiative is PCORnet, the National Patient-Centered Clinical Research Network, our effort to harness the power of data—and unique partnerships—to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
PCORnet’s 33 networks all work toward the vision of bringing data together from across partners. In one, the Alzheimer’s PPRN, or Patient-Powered Research Network, patients with Alzheimer’s and other dementias, as well as caregivers, provide their medical data and ideas to improve quality of life and accelerate development of treatments. In another PPRN, people with anxiety, depression, and other mood disorders come together in an online network to support each other and to be part of studies that will inform their care.
PCORI’s priorities, including its commitment to funding research on rare diseases, are also reflected in our PCORnet partner networks, which use IT to pull together data from people all over the country who have these unusual conditions.
Precision Medicine and Telehealth
Precision medicine studies draw records, data, or specimens from a huge number of people to help develop treatments tailored to individuals. The idea behind precision medicine—that treatment and prevention should take into account individuals’ backgrounds and preferences—is perfectly aligned with PCORI’s goals to bring the right treatments to the right people. One of our funded projects studying whether individualized strategies are more effective than standard approaches looks at breast cancer screening.
PCORI has also funded more than two dozen projects on telehealth, many of which focus on delivering health care to underserved populations.
Digital Consumer Tools
Some PCORI projects test whether digital interactive programs can provide information or otherwise improve decision making about health care. In initial results, one study has found that older adults who use an online program to strategize about how to deal with health crises later demonstrate more extensive planning, knowledge about support services, and communication about their preferences. In another study, preliminary results show that a questionnaire that arthritis patients fill out on a tablet while in a doctor’s waiting room accurately reflect their experiences and reveal more impairment than do standard measures.
Other PCORI-funded studies are testing apps designed to help families decide how to treat children’s emergency appendicitis or that may improve the experiences of cancer patients taking oral chemotherapy.
In all of our funded projects, PCORI encourages the use of innovative IT approaches and collaboration between scientists, patients, and a broad range of other healthcare stakeholders. Technology provides ways to engage patients that will improve the relevance and usability of research.
We’re convinced that IT can help us increase the country’s capacity to conduct health research, create and test digital interventions to improve clinical outcomes, and incorporate perspectives across the healthcare spectrum. We invite you to explore all of our funded studies at our Research & Results website.