I represent the COPD Foundation as a patient advocate for the Personalized Medicine Initiative. I would like your feedback on the principles that we have proposed.
Patient-Centered Principles for a Personalized Medicine Research Agenda
Draft Principles
- Patient/caregiver values includes personal priorities, religious/spiritual values, societal and cultural values (including family involvement in care decisions), views around quality of life, privacy concerns, and beliefs about health and personal responsibility.
- Patient/caregiver circumstancesinclude emotional state, socio-economic situation, race/ethnicity, language, ability to work, access to care, social support, cognitive abilities, attitude toward illness, personality, symptom burden, health-related quality of life, ability to consent and choose, relationship with the healthcare provider, the role of patient as a caretaker, preferences of family members, other social determinants of health, and other expressed needs or barriers.
- The research agenda would be most helpful if it focused on priorities that help providers in (a) identifying and communicating treatment options based on biological differences in the context of patient/caregiver values and (b) understanding patient/caregiver circumstancesand presenting treatment options in ways that highlight how a treatment aligns/does not align with those circumstances.
- The research agenda should address the education of patients directly by considering (a) the education of patients as a process over time, (b) how both patients and their providers can improve communication with each other, and (c) how to close the gap between patient expectations and the reality of how/when results and treatment options are delivered.
- The agenda should consider how to use oncology as a prototype for patient and provider education in disease areas beyond oncology.
- Access challenges beyond those created by a lack of communication and education should also be considered. This includes timely access to novel therapies as a result of affordability, insurance coverage and provider availability.
- The research agenda should be holistic by identifying research topics inclusive of diverse patient needs, disease, backgrounds, and experiences, including patients under-represented in medical research. Specifically, the research agenda should apply across disease areas.
- How can the research agenda apply to additional disease areas as new personalized medicine treatments come to market?
- The research agenda should account for the management of comorbidities.
- The advisory committee should consider areas the agenda must include and exclude to have the greatest impact.