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Clinical pathways in the age of personalized cancer care may be excluding a key component: patient perspective.

In a Turning the Tide Against Cancer webinar this week, panelists explored recent analysis of the development and implementation of clinical pathways.  Pathways are step-by-step care plans designed to improve quality of care, reduce variation in practice and efficiently use health care resources.  Ideally, they can help physicians stay current in quickly evolving areas such as personalized medicine.

But, as Daryl Pritchard, PhD, of the Personalized Medicine Coalition explained, poorly designed pathways can have detrimental effects – impeding patient access to innovative treatments, limiting physician autonomy, and creating barriers to patient-centered care.  Yet cancer patients are seldom involved in developing pathways. And few know when they are on one.

This, panelists agreed, is a problem.

Patient feedback is “completely missing,” explained Guy D’Andrea of Discern Health.   Kimberly Westrich of the National Pharmaceutical Council echoed the sentiment, calling patient involvement “critical” but absent from clinical pathways development, implementation and analysis.  She argued for transparency.

These concerns were hardly news to Patricia J. Goldsmith of CancerCare In a recent survey, CancerCare discovered that 95 percent of cancer patients didn’t understand the concept of clinical pathways.  Upon explanation, patients had concerns and questions.  Did the pathway prevent them from getting better treatment? Was their physicians incentivized to keep them on the pathway?  As Gilbert S. Omenn, MD, PhD, of the University of Michigan explained, patients want to understand the “basis behind recommendations driving their own care.”   

Turning the Tide Against Cancer’s discussion paper recommends that an independent third-party, similar to the National Committee for Quality Assurance, oversee the clinical pathways process.  The third party would require that patients are informed when they’re on a clinical pathway and include their feedback in the development process.

Webinar panelists also identified other potential concerns about clinical pathways:

 

As Kimberly Westrich summarized, “Pathways and can help or hinder… it all depends upon how they’re developed and implemented.”

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