Discussion Questions

If you were not able to join us live, we invite you to answer the following questions which were posed during PMC's second web forum on January 31. Your responses will help us plan for our next web forum in the late spring.

A recording of the webinar and the slide presentations can be viewed here

Thank you for your responses, and if you have any questions, please feel free to contact David Davenport, Project Manager and PMC Manager, Public Policy, at ddavenport@personalizedmedicinecoalition.org.

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* 1. Contact Information:

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* 2. Which of the following best describes you? (Check all that apply)

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* 3. How would you describe your understanding of personalized medicine? (check all that apply)

On our last web forum, participants reported that it is important for physicians to consider a patient’s values and circumstances when recommending a personalized medicine treatment strategy.

Participants noted that the research agenda would be most helpful if it focused on priorities that help providers in:
  • Identifying and communicating treatment options based biological differences in the context of patient/caregiver values, and
  • Understanding patient/caregiver circumstances and presenting  treatment options in ways that highlight how a treatment aligns/does not align with those circumstances

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* 4. Should research guiding health care provider communication be a primary focus of PMC’s research agenda?

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* 5. Who else should we consider as a focus for the research agenda?

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* 6. For our last web forum, we defined patient/caregiver values as personal priorities, religious/spiritual values, societal and cultural values (including family involvement in care decisions), views around quality of life, and beliefs about health and personal responsibility.

Do you agree that this is an accurate definition of patient/caregiver values?

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* 7. For our last web forum, we defined patient/caregiver circumstances as emotional state, economic situation, access to care, social support, cognitive abilities, attitude toward illness, relationship with the healthcare provider, and role of patient as a caretaker.

Do you agree that this is an accurate definition patient/caregiver circumstances?

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* 8. On today’s web forum, you heard from Food Allergy Research and Education (FARE) about the organization’s project to establish a research agenda for food allergy. FARE used a structured process for soliciting applications and selecting members for their project advisory committee.

Should PMC follow a similar process soliciting applications and selecting members of our advisory committee?

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* 9. What stakeholder groups should we include in our 45 person advisory committee to ensure that we focus our research agenda on priorities that fill gaps in treatment decision making and communication aligned with patient/caregiver values and circumstances? (Please check all that apply.)

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* 10. During today’s web forum you heard from the Cerebral Palsy Research Network (CPRN) about the organization’s project to establish a research agenda for cerebral palsy. The CPRN used an online voting system to build consensus around priority research areas to pursue through their research network.

Given that there is interest in involving other stakeholders in the agenda setting process, should PMC consider incorporating a similar consensus building mechanism to further vet the principles we are developing together through these web forums?

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* 11. Are there other elements of the FARE and CPRN projects that that PMC should adopt as part of the process to set our research agenda?

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* 12. Additional comments:

Please select "done" to submit your responses. 

Thank you for taking the time to complete this survey. 
If you have any questions, please contact David Davenport, PMC Manager of Public Policy and Project Manager, at ddavenport@personalizedmedicinecoalition.org.

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