Policy Briefing #9 - Empowered Patients in Research: Moving Beyond Participation

In the run up to this year’s Patient Solidarity Day, this month’s policy briefing further explores the theme of patient empowerment, this time focusing on the role of patient empowerment when patients participate in research. 

For truly patient-centred healthcare, patients must be empowered to have control over their healthcare decisions, which is why IAPO’s Declaration on Patient-Centred Healthcare gives patient empowerment  as one of its core principles. In research studies, the importance of an empowered patient is even clearer; their opinions, priorities and values must be considered, or the research risks failing to produce effective outcomes for those it is aimed at. A patient taking part in research must be treated as a valued equal, and a co-shaper of the process, regardless of disease or country. 

This briefing clarifies what it means to be an empowered patient in research, and outlines how patients can be empowered before, during and after participation in a research study.

Some of the key points made were:

• Patients should be considered not just as sources of data, but as individuals who hold valuable information and opinions that will benefit research
• Patient input is important in identifying research priorities before a research study, keeping the process patient-friendly during a research study, and ensuring the outcomes are appropriately communicated after a research study
• Patients should use the resources available to them to become knowledgeable about their opportunities, rights, support, and expertise when taking part in research

This month’s policy briefing was written by Grace Melvin (Policy Research Intern) and Antonio Ciaglia (Policy Manager). If you have any questions or comments, please get in touch via email at grace@iapo.org.uk and antonio@iapo.org.uk. 

Read the policy briefing on patient empowerment here

• Policy Briefing #1: Patient-Centered Healthcare
• Policy Briefing #2: Patient Information and Health Literacy
• Policy Briefing #3: High quality access to care
• Policy Briefing #4: Patient Involvement in HTA
• ​Policy Briefing #5: Patient Safety 
• Policy Briefing #6: Medicines Regulatory Harmonisation
• Policy Briefing #7 - Pain Management​
• IAPO's 2017 Member Engagement and Empowerment Plan​​