Developing appropriate principles for the communication of CER results reflects PIPC’s long-standing commitment to high-quality, patient-centered CER. Building on a series of patient and provider community roundtables, as well as insights gained from a national poll, PIPC heard clearly from leading provider and patient representatives that they value patient-centered CER and want to help develop effective tools for disseminating results in support of high-quality, patient-centered care. While PIPC’s recommended communications principles reflect extensive research and engagement with the patient and provider communities, they are expected to function as a living document that will continue to evolve based on continual feedback.
As the scope of CER evolves, PIPC will continue its work to keep patient interests at its core. PIPC Chairman Tony Coelho stated, “I am pleased to see that the Patient-Centered Outcomes Research Institute is developing an action plan for disseminating CER research findings, and urge the Institute to work closely with patients and their providers so that the information is useful at the point of care. As a broad-based coalition of patients, providers and other stakeholders, PIPC is pleased to provide to PCORI with constructive guidance in this process. We look forward to continued collaboration.”
In summary, PIPC’s recommendations are:
- CER communication should rely on significant input from patients and providers in the development of materials and implementation of dissemination program.
- CER communication tools should be developed through systematic, transparent processes with active patient engagement.
- CER communication tools should present results in ways that are useful and comprehensible.
- CER communication should help providers and patients relate average study results to the needs and preferences of the individual patient, including clearly presenting both the strengths and limitations of study results.
- CER communication materials should be designed to enhance patient and provider decision-making at the point of care, and integrate efficiently into providers’ workflow.
- Communication tools and materials should provide sufficient information on the range of relevant health care or medical options.
- Research Results Included in CER Communication Programs Should Rely on Data from Rigorous Study Designs
- CER communication tools should be continuously updated to keep up pace with changes in evidence base, clinical practice, and medical technology.
PIPC's Steering Committee is comprised of the following organizations: The Alliance for Aging Research, the American Association of People with Disabilities, the American Association of Neurological Surgeons, the American Gastroenterological Association, BIO, Easter Seals, the Epilepsy Foundation, HealthHIV, the National Association for Hispanic Health, the National Alliance on Mental Illness, PhRMA, and the American Association for Cancer Research. PIPC can also be followed on Facebook and Twitter at @pipcpatients.