The science of patient input

Posted - June 2016 in Research Highlights

Integrating patient needs and priorities

 

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Medical research organisations, the pharmaceutical industry, academia, government and funding agencies are increasingly recognising the need for, value, and place of, the end-user or customer perspective in their attempts to do a better job of making a positive difference in the lives of people with medical conditions.

 

From consultation to participation to engagement, populations of people with medical conditions, and their support organisations, are being increasingly included in the process of medical research and development. Everything from upstream assessment of needs; defining outcomes of value to the people affected; influencing clinical trial design, conduct and participation; measurement and reporting… there is a valuable role to be played.

 

It is early days in the creation of a science of patient input. Participants are establishing rigorous methods to better integrate patient perspectives, needs, and priorities throughout biomedical and bioengineering R&D and care delivery to patients. To assess progress and unmet needs, FasterCures tracked more than 70 collaborative initiatives clustered in six categories that are defining and shaping this developing field. No longer is patient engagement a fanciful notion as it was at the start of our journey in 2003, and the rush of activity is welcome and vital.

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Momentum is building to incorporate patient preferences into the biomedical Research and Development system so that products and services better align with patient needs, improve individual and public health, and reduce time and spending on unproductive care.

The goals of this new field are to develop rigorous methods so as to better integrate patient perspectives, needs, and priorities across the translational research continuum. We tracked more than 70 collaborative initiatives that are further defining and shaping patient-centered practice and policy.

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The Patient-Centered Outcomes Research Institute (PCORI) requires that all its funded investigators partner with patients from the beginning of the application process through completion of the study and dissemination of its results. To guide formation of meaningful engagements with patients, PCORI developed a Patient Engagement Rubric and a compensation framework that now guide applicants, reviewers, and awardees at every step. The engagement principles outlined in the rubric—reciprocal relationships, colearning, partnership, trust, transparency, and honesty—have become the essential characteristics of patient-centeredness in R&D and health-care delivery.

 

Read more… here is a link to the full article http://stm.sciencemag.org/content/8/336/336ps11.full

 

SOURCE: Science Translational Medicine 27 Apr 2016: Vol. 8, Issue 336, pp. 336ps11 DOI: 10.1126/scitranslmed.aaf6730 Copyright © 2016, American Association for the Advancement of Science

 

On the path to a science of patient input

 

Margaret Anderson and K. Kimberly McCleary

FasterCures, Washington, DC 20005, USA.

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