Study Issues

Patient-Centered Research & Protocol Design

Last Updated: Oct 9, 2012

I'd love to discuss how people are using/interpreting the concept of patient-centered research* and protocol design to enhance recruitment and retention. 

In essence, how do we engage patients and providers from the design of the scientific question, through the design of the protocol (including the schedule of events/procedures), to ensure that the question is relevant to

  • The way patients live with their diseases and disorders,
  • What's important to them in terms of treating their disease (e.g. curative, disease modification, slowing disease progression, improving function and quality of life, etc.)
  • The providers that treat them and the role they aspire to (scientists practicing the best evidence based medicine)

and will provide answers that will help improve the quality of their lives. 

Please share your thoughts and ideas, the relationships you are building (or plan to build) with patients, advocacy groups, communities of providers, etc. so that we can move beyon the crisis that the clinical research enterprise is facing.

*See the Patient Centered Outcomes Research Institute at

Linda Parreco's Image

Thanks so much for your post Jamie--this is a great question for the AccrualNet community. The link to PCORIs web site is also very interesting. 


MARGO's Image

Our organization, along with community-campus partnerships for health, outlined specific recommendations around community engagment in cancer trials in a national think tank report at We also wrote an article about our "adventures" doing this work...

We continue to work to advocate in this area but find it very challenging. Personally, i think a lot of lip service is done around community engagement without a lot of meaning.  Hoping PCORI will make some changes in this area. 

MARGO's Image

Hi- we published a think-tank paper on CBPR (community based participatory research) and cancer treatment trials- see I personally dont think that the two need be mutally exclusive and im glad to see that PCORI is taking this on related to funding. I only hope that the cooperative groups and NCI will take their lead as well. 

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