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Table 2 PIOs’ recommendations for the realization of PM

From: Patient and interest organizations’ views on personalized medicine: a qualitative study

Recommendations
Policy-making
• Establish principles and criteria for equitable patient access to PM
• Modernize drug licensing mechanisms, e.g. through adaptive pathways
• Allocate specific funding to the implementation of PM
• Implement PM gradually, e.g. through pilot projects including the most needy patients
Patient-centered health care
• Provide simple, actionable genetic information to patients; ally with genetic counselors
• Take into consideration the patients’ values, personal situation and health literacy level
• Protect the patient’s right not to know
• Educate patients and health care professionals in PM strategies
Increased, inclusive research
• Conduct more basic/epidemiological research
• Invite patients and PIOs early in the planning and design of clinical trials
• Broaden eligibility criteria to recruit more patients in research
Data sharing and protecting privacy
• Develop privacy-solid biobanks and data sharing infrastructures
• Ask for permission before using personal health data
• Develop flexible and interactive consent mechanisms
PIOs’ active participation in agenda setting
• Engage as early as possible in the development of PM
• Contribute to educate stakeholders in PM
• Contribute to design the PM agenda, e.g. by identifying priority areas
• Support the development of collaborative research projects
• Respond to national hearings of relevance for PM
• Join research ethics committees and drug approval boards
• Develop partnerships with medical professions, e.g. through medical expert panels
• Develop partnerships between PIOs nationally and internationally
• Develop partnerships between PIOs and researchers, medical professions, and policy makers