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Science Translational Medicine Article Tracks Emerging Field of Science of Patient Input

FasterCures’ Anderson and McCleary Explore Incorporating Patient Preferences into R&D

For immediate release

April 27, 2016

April 27, 2016 cover of Science Translational MedicineWASHINGTON—In an article published today in Science Translational Medicine, FasterCures’ Margaret Anderson, executive director, and K. Kimberly McCleary, managing director, find that 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. They track more than 70 collaborative initiatives clustered in six categories that are defining and shaping a developing field: the science of patient input.

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.

“We don’t want a minute wasted on duplicating efforts,” the authors say in the article, “On the Path to a Science of Patient Input,” which is why they go on to summarize and encourage broad use of resources that are already available and capture a baseline assessment to benchmark growth and identify areas of unmet need.

Anderson and McCleary conclude the article with noting overarching trends:

  • Avoid duplication and make your work easy to find: Bringing better visibility to one’s completed work and products ready to be used is a low-cost, high return action step that would help newcomers get started and seasoned practitioners identify where more work is needed.
  • We need evidence: We are getting better at incorporating real-world success stories into the narrative of patient centricity, but we need more formal ways to document and share experiences.
  • Help wanted: There is a shortage of academic researchers prepared to hone techniques and methods for turning the patient experience into usable data.
  • This is not a one-size-fits-all effort; customization is required: As best practices are established to gather and convert insights into actionable data, it is likely that we’ll need to tailor practices to the special features of each affected community, taking into account whether the condition is chronic, acute or terminal; its prevalence or rarity in the population; the stage of scientific understanding about its cause or pathogenesis; and social dimensions such as how connected or dispersed patients are and whether there might be harmony or discord among the groups that serve the patients’ needs.

To see the full list of more than 70 collaborative efforts in the science of patient input, visit www.fastercures.org/patients-count-resources.

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About FasterCures
FasterCures, a DC-based center of the Milken Institute, is driven by a singular goal – to save lives by speeding up and improving the medical research system. It focuses on cutting through the roadblocks that slow medical progress by spurring cross-sector collaboration, cultivating a culture of innovation and engaging patients as partners. FasterCures works across sectors and diseases to accelerate the process by which great advances in science and technology are turned into meaningful medical solutions for patients.
www.fastercures.org
@fastercures

About the Milken Institute
The Milken Institute is a nonprofit, nonpartisan think tank determined to increase global prosperity by advancing collaborative solutions that widen access to capital, create jobs and improve health. It conducts data-driven research, convenes action-oriented meetings and promotes meaningful policy initiatives.
www.milkeninstitute.org
@milkeninstitute

Contact
Karen Rogers
Associate Director, Communications, FasterCures
krogers@fastercures.org