Results from research tests that are not part of standard care may still be of interest or medically relevant to research participants. Participants should be given the option to receive these results, and they should be provided in a way that they can share with their healthcare team, if this isn’t done automatically. Care should be taken to provide a clear interpretation of the results for participants, preferably in person.
Considerations
- Research teams should consider how to ethically share individual results wherever possible.
- The formatting and language of results should be co-designed with consumer representatives to make sure they are easy to understand.
- When seeking ethics approval to share results, researchers could provide a template for what would be included in any individual results sent to participants. This should include the formatting for any graphs or tables, so that the clarity and relevance of the information to be supplied to participants can be reviewed.
Participant experience
- Participant should be given the option to receive their personal results wherever possible/appropriate, depending on the study design.
- Any written results provided to participants should include a clear summary and explanation of the information and any medical terms used. While these terms may be explained by clinical staff in a meeting with the participant, staff should be aware that participants may want revisit the document later or share it with others.
- Layering of the information (for instance through links to websites) so that people can seek more information if they want may be a useful approach.
- I found it really traumatising when I didn’t know what was happening. The staff learned that I needed to know, so they would print my fortnightly blood results and explain them to me.
- You need to be sure that people have the capacity to take the information on board. There are ways to format it, like infographics or an in-person, audio or video explanation, that can make the results easier to understand.
- I asked if I could get the result, and the staff said “no-one’s ever asked that before, I don’t know”.
Suggestions
- Share clear expectations on what can or can’t be shared with participants depending on the study design.
- Ask each participant if they would like to receive their results.
- Any graphics and wording in written results should be co-designed with consumers.
- Discussion points likely to be encountered should be shared with site staff.
- The format chosen for written results should be sharable with their health care team. This may include the research staff communication directly with the participant’s health care team.
