Investigating service user ethical priorities in psychological research Rachael Carrick

What makes service users feel they have been treated properly when researchers are looking at how people tick? L-T Merwood

RECs are responsible for acting primarily in the interest of potential research participants and concerned communities Central Office for Research Ethics Committees, 2001, p. 6

Official committees decide whether or not particular research projects can go ahead. The most important thing they must take into account is the good of people who take part and the good of people the research could affect.

Explaining terms What words mean Service User Service User Ethical priorities Ethical priorities Psychological Research Psychological Research Service User Service User Being treated properly Being treated properly Finding out how people tick Finding out how people tick

Images from COREC

What has been done before Experimental work around RECs Psychological research ethics User views on ethics

Methodology Consultation Consultation Nominal Group / Expert focus group … Nominal Group / Expert focus group … Online (or post) Delphi questionnaire, 17 items, rated 1-7 importance + comments Online (or post) Delphi questionnaire, 17 items, rated 1-7 importance + comments Round two Delphi Round two Delphi average (median) average (median) agreement levels (high, medium, low) agreement levels (high, medium, low)

How it worked Starter group Starter group First questionnaire First questionnaire Second questionnaire Second questionnaire

Participants Consultation Consultation 3 service users knowledgeable about research 3 service users knowledgeable about research Nominal Group / Expert focus group Nominal Group / Expert focus group 6 service users, mixed but most mental health 6 service users, mixed but most mental health Delphi Delphi 92 service users, 71% female, 81% mental health 92 service users, 71% female, 81% mental health 58 service users, 72% female, 84% mental health 58 service users, 72% female, 84% mental health

Results 17 statements 17 statements 9 reached consensus criteria 9 reached consensus criteria 4 didn’t quite 4 didn’t quite 4 had substantial disagreement 4 had substantial disagreement Example statements from each area Example statements from each area Comments Comments Median and agreement levels Median and agreement levels

Results People mostly agreed about half the things on the questionnaire. They thought they were all very important. People mostly agreed about half the things on the questionnaire. They thought they were all very important. On other things people had more different ideas about what was important. On other things people had more different ideas about what was important. The most interesting things were The most interesting things were Things people disagreed about the most Things people disagreed about the most The reasons people gave for their views The reasons people gave for their views

People agreed that: Service users should help decide whether research projects are reasonable, respectful and fair Service users should help decide whether research projects are reasonable, respectful and fair Researchers should be up front with people about what they are doing Researchers should be up front with people about what they are doing Research should be well planned so all kinds of people can take part if they want Research should be well planned so all kinds of people can take part if they want If research upsets or unsettles people they should be helped to get over it If research upsets or unsettles people they should be helped to get over it

People disagreed about: Being paid! Being paid! Whether researchers can ask upsetting questions Whether researchers can ask upsetting questions How involved services users should be in choosing what research is done How involved services users should be in choosing what research is done

Where there was agreement Of the 9 statements reaching consensus all rated Very Important Of the 9 statements reaching consensus all rated Very Important e.g RECs should have people on them to represent service user views e.g RECs should have people on them to represent service user views Median 7; Range 5-7; IQR 0.00 Median 7; Range 5-7; IQR 0.00 Themes Themes SUs provide a different and much needed perspective If RECs are making decisions regarding SUs, SUs should be on them

Where there was some disagreement Those statement that did not reach consensus (4) Those statement that did not reach consensus (4) There should be a good chance that research can make a positive difference to people’s lives There should be a good chance that research can make a positive difference to people’s lives Median 6.5; Range 1-7; IQR 2.0 Median 6.5; Range 1-7; IQR 2.0 see quote... see quote...

Example comment: Although I think a major aim of research should be to identify knowledge that benefits people’s lives, to suggest all research should do this would be to deny some research might not show that e.g. some therapies don’t work but more importantly ‘box in’ researchers to do only what appears useful and prevent researchers proving/disproving care that might not yet be obvious but will be in the future. Researchers should be creative as well as practical. Katie

Where there was more disagreement 4 Statements including: 4 Statements including: Research should avoid asking questions that could upset participants Research should avoid asking questions that could upset participants Median 3.0; Range 1-7; IQR 3.0 Median 3.0; Range 1-7; IQR 3.0 See quotes See quotes

Example comments: An upsetting question that is asked may cause discomfort for five minutes, an upsetting question that is not asked may cause discomfort for a lifetime - how can we be educated about what upsets people if we don’t ask and consult them? Lucy People have the right to choose to do something that could be upsetting Emily

Broad themes across the items Choice Choice Balancing empowerment and protection Balancing empowerment and protection The similarities and differences between research and therapy The similarities and differences between research and therapy The importance of relationship The importance of relationship Participants’ motivations Participants’ motivations Service User understandings of the concept of science Tension between objectivity and relevance

Example comment: There seemed from my own experience to be a conflict between the scientific requirements of the trial, i.e. that all treatment plans in the trial should be comparable, and the importance of a treatment plan being tailor- made for an individual, e.g. I needed to talk at some length about the history of my condition in order to be able to build up trust with my practitioner. This was not possible within the constraints of the trial and was one reason why I decided to stop treatment within the trial and continue it outside. Chloe

Implications What next? Representativeness of the sample Representativeness of the sample Timing of the research – openness to SU input Timing of the research – openness to SU input Dissemination Dissemination Asking the right people Asking the right people Being realistic about what you can get done Being realistic about what you can get done Letting people know what you found out Letting people know what you found out

Why Delphi? What is Delphi? What is Delphi? Flexible Flexible Consensus methodology appropriate in the area of ethics Consensus methodology appropriate in the area of ethics Allows collection of quantitative and qualitative information Allows collection of quantitative and qualitative information Allows the views of a large group to be analysed without losing opportunity for individual comment Allows the views of a large group to be analysed without losing opportunity for individual comment