On the Path to a Science of Patient Input

Article published in Science Translational Medicine,  by Margaret Anderson and Kimberley McCleary, April 27, 2016.

Abstract:  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.

In the 21st century, market research is a business imperative for most industries. In 2011—decades after Steve Jobs famously said, “A lot of times, people don’t know what they want until you show it to them”—Apple started a market research group that sends anonymous surveys to invited users to find out exactly what they want from their devices. In January 2016, IBM formally launched a company-wide process to shift its culture to focus on users’ needs (1). Health care and the research and development (R&D) of biomedical products have lagged behind other technology sectors in moving toward consumer-centered practices. Now, as a result of multiple cultural influences and pragmatic factors, the mindset of these stakeholders is changing, and the patient’s role is expanding (2). Momentum is building to incorporate patient preferences into the biomedical R&D system so that products and services better align with patient needs, improve individual and public health, and reduce time and spending on unproductive care.

With its broad network of stakeholders—patient organizations, industry, academia, government, and funding agencies—FasterCures has a distinct vantage point into this landscape of new patient-centered activities; such information is crucial to the creation of a new field: The science of patient input. 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. In this Perspective, we summarize and encourage broad use of resources that are already available, and we capture a baseline assessment to benchmark growth and identify areas of unmet need. We don’t want a minute wasted on duplicating efforts.

Read full article here.