Stage 4: Undertaking & Analysing
This is the only stage of the research cycle where you will likely need ethics and research governance approval if you involve patients or members of the public, e.g. when they will be collecting and analysing data, conducting interviews, facilitating focus groups or recruiting participants.
This shouldn't put you off, but it's important to be aware so you allow enough time to get this done before continuing.
Why involve the public/patients at this stage?
Including members of the public or patients as active members of the research team can improve the dedication of those involved to the project. It can also mean the research is carried out by people with a personal experience of the research area whose perspectives can enhance the data gathering and enrich the interpretation of the results.
How your research could benefit
Involving patients or the public in undertaking and analysing your research can:
- Improve the quantity, quality and relevance of data collected
- Improve honesty, reliability and depth of participant responses (e.g. feedback about treatment) due to the natural rapport established between lay researchers and research participants
- Improve the experience of participants who may find the process less threatening and hierarchical with peer researchers
- Bring novel insights and interpretations to the research that reflect the patient/public perspective, not just the scientific
- Enrich and improve the quality of your interpretations and conclusions
- Gain greater public/patient buy-in from those involved, which could help with dissemination and implementation
- Increase the likelihood of publication in a peer-reviewed journal, especially those that are patient-reviewed
How you could benefit
Involving patients or the public in your work at the undertaking and analysing stage can have a positive impact on you too:
- Opportunity to work as part of a diverse and more representative research team
- Gain deeper/more personal insights into your research area
- Gain respect for your 'lay' expert knowledge and lived experience
- Develop your ability to discuss results with different audiences
Ways to involve the public at this stage
- Involve patients/the public in gathering data, performing library-based research or reviewing documentary evidence
- Involve patients/the public in active research with participants (e.g. carrying out interviews or running focus groups) – N.B. this requires ethics approval and adequate training
- Collaborate with people when analysing and/or interpreting your data and results. This can help identify themes that may otherwise have been missed and highlight what’s most relevant to patients/the public
- Invite people to review your interpretations and conclusions
- Involve people in a citizen science project – while not normally direct involvement, if those taking part are able to feedback into the research design and/or analysis then this could be a creative approach to trial involvement with a wide audience – visit the Action Catalogue for more on this approach
- For systematic reviews people could help by: identifying gray literature; suggesting, locating and appraising current literature; or interpreting findings
Here are a few real-life examples for inspiration:
3 column colour block - Impress/Macmillan/INVOLVE
Published examples of Public Involvement in undertaking and analysing research
- Wright D., et al. Listening to the views of people affected by cancer about cancer research: An example of participatory research in setting the cancer research agenda. Health Expectations 2006;9(1):3-12.
- A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges
- Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an ‘inclusive’ research approach
- Exciting but exhausting: experiences with participatory research with chronically ill adolescents
- Patient and Public Involvement in the Coproduction of Knowledge: Reflection on the Analysis of Qualitative Data in a Mental Health Study
- Harden A., et al. Case Study Diabetes Peer Educators: Research, Policy and Practice September 2015.
- Carers of people with mental health problems as co-researchers: reflections on the Partnerships in Carer Assessment Project (PICAP)
- Co-research with older people with dementia: Experience and reflections
- Key patient-reported outcomes in children and adolescents with intoxication-type inborn errors of metabolism: an international Delphi-based consensus
Published examples where Public Involvement has been used for systematic reviews
- Patient involvement in a qualitative meta-synthesis: lessons learnt
- Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects
- Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews
- Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment
Resources for lay partners involved in analysing and interpreting
If you're interested in the benefits of public involvement at this stage, here's how to getting going: