Table 2 PIOs’ recommendations for the realization of PM

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