Table 2.
PIOs’ recommendations for the realization of PM
| 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 |