Trust and sharing patient data for research in the Oxford University Hospitals NHS FT
Meeting dates: 2nd, 3rd and 9th March 2019
Trust and trustworthiness are important ideas for the way society works. They are particularly important in the context of health care and medical research. The NHS keeps records of almost all patients and their treatments. Each patient’s records can be used by health care teams for the care of that patient. In certain situations, medical researchers are allowed to use these records for their research for the benefit of patients generally but not necessarily for the individual patients in question. There is a complex set of laws, rules and regulations that control when and how researchers can use NHS patient records for their research. These include research ethics committees and data controllers of various kinds. Arguably, these governance processes are designed, in one way or another, to help us trust the way our data is used and shared.
In our research, we will work together with a small group of 8-10 members of the public to think about what trust is and how it relates to the processes that operate in the local NHS and Oxford University context. We hope that as a group we can develop an understanding of trust as it relates to the use of patient data within the NHS in Oxford.
Philosophers and ethicists have thought about trust and trustworthiness but for the most part they have not applied it in the context of the NHS and medical research. By coming to understand the rules, regulations and processes in the local context, as well as the ways in which philosophers have understood ‘trust’ and ‘trustworthiness’, this project will develop new ideas about the way in which we should think about trust and trustworthiness in the context of medical research on patient medical records.
This form of public discussion is a new approach to thinking about the ethical issues surrounding the use of medical records. Because of this, one of our colleagues will be observing how things progress and taking notes about the process so that we can learn from it. Our colleague will also ask some of the participants about their views on this process during the planned meetings.
What is involved for participants?
Three meetings will take place across three different weekend days in March (2nd, 3rd and 9th). If you agree to participate, you will be expected to attend on all three days. The meetings will take place as follows:
- The first day and a half will involve presentations about (and discussion of) the local context and about the idea of ‘trust’.
- The rest of the second day and the third day will involve discussions and writing work undertaken by the group as a whole. These discussions will be led by the researchers, who both work in applied ethics, but will be jointly discussed and agreed with all participants.
- There will be some reading to be completed before and after each meeting.
Participants will be paid £100 per day for being involved. Participants may withdraw at any time and will be paid for the amount of time they gave to the project.
An academic paper will be produced by the group following the end of the meetings. This paper will have all participants as co-authors, unless participants decide not to be named on this paper.
Please contact Dr Mark Sheehan (firstname.lastname@example.org) if you are interested in further information
This meeting is supported by