IT, patient-centered research key to pushing disease prevention efforts

Information technology will be crucial to pushing disease prevention efforts in healthcare, according to a recent viewpoint published in the Journal of the American Medical Association.

A "widespread uptake" of personalized health technology, the researchers say, is needed to "reduce the burden" of chronic diseases such as heart disease, cancer or diabetes. For that to occur, they say, a framework that encourages basic technology use is necessary.

"Investing in prevention should be a strategic national priority to help improve the lagging population of the United States compared with peer countries," say authors Derek Yach of the New York-based Vitality Institute and Chris Calitz of the Bloomberg School of Public Health at Johns Hopkins University. "Increasing federal funding for prevention science and fostering stronger public-private partnerships are important steps toward providing policy makers with evidence-based tools to use limited resources effectively and efficiently."

Patient-centered research efforts could be key for building a case for the cost-effectiveness of prevention interventions, according Yach and Calitz. The Affordable Care Act, they point out, mandated the Patient-Centered Outcomes Research Institute (PCORI).

In December, PCORI approved $93.5 million to support 29 clinical data networks it hopes to integrate to improve comparative effectiveness research. PCORI plans to combine the networks to form PCORnet--the National Patient-Centered Clinical Research Network--to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs.

Eleven Clinical Data Research Networks (CDRNs) will be funded, such as the National Pediatric Learning Health System from the Children's Hospital of Philadelphia. In these, healthcare organizations pool information from various data sources including electronic health records.

In addition, funding will go to 18 Patient-Powered Research Networks (PPRNs) formed by patient groups to exchange information on a particular condition. The Epilepsy Foundation's Collaborative Patient-Centered Rare Epilepsy Network and the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network) at the University of South Florida are among these.

In particular, Kaiser Permanente plans to use $7 million to build a data network aimed at improving cancer, obesity and heart diseases outcomes this year, the health system announced in January. That network will be part of PCORnet.

To learn more:
- read the JAMA viewpoint