Advice on involving people with experiential knowledge in suicide and self-harm research.

By Donna Littlewood on behalf of members from the PPI group – Mutual Support for Mental Health

The following responses were provided by members of ‘Mutual Support for Mental Health’ the lived experience advisory panel for the Centre for Mental Health and Safety at the University of Manchester.

What are the key things you would tell researchers who are new to involving people with experiential knowledge in their research?

• Agree ground rules at first meeting then at each subsequent meeting check in on how the ground rules are working to help people to manage their involvement in the group –whether any ground rules need revising
• Don’t assume people know what your academic research world is like! Try to give them an insight into your world
• The thing that comes to mind is not all people speak jargon, so don’t blind them with science, Keep it simple. Also be aware of sensitivity – depending on what you are researching but be careful.
• Be open & honest with people. Don’t use over medicalised language but bear in mind that most of us have become experts in our own care and support and about what is really available. We have developed friendships with people with similar illnesses and experiences to our own and will have known people who have died. Our illness means that at times we have to work very hard to stay alive whilst feeling we are alone in doing so. We enjoy life too, but fear is close.
• Be flexible in engaging with different people’s changing needs – they may become ill or relapse during your engagement so be prepared to react helpfully
• Be genuine about PPI. Be clear in what you want from PPI reps. Be clear about when and how you plan to engage with PPI reps. Be clear about your expectations of PPI reps. Outline the timelines involved and the volume and variety of work that PPI reps can potentially be involved with. Make sure you mention practical issues: refund of travel, payment for time, meet peoples accessibility needs, hard copies of paperwork in the post if needed.
• Keep PPI Lay Reps informed of progress made. Including success or failure of grant applications submitted, as opposed to finding out from others/ from other avenues
• Maintain regular contact
• Ensure PPI Reps are involved at the dissemination stage, particularly in patient/ client facing events’

What can researchers do to make it easier for you to get involved with their research?

• Inductions are always good when lay people enter a professional world – consider different people may have different levels of knowledge and access requirements – make adjustments if necessary
• Include ongoing training when required for participation and development of the group – this is our CPD opportunity!
• Thank people for and acknowledge their participation both as a group and as individuals –contributing such personal stuff can be difficult sometimes
• Access training available via MIND who offer a plethora of person-centred opportunities.
• It is important that the research show empathy as it would put me off if I felt the attitude of the researcher was one that lacked empathy.
• Background to the research, the problem/ issue it is trying to address. Research Methodology training. Training in interpretation of qualitative data.
• Researchers should be enthusiastic and passionate about their subject matter, and show how there is genuine potential for involvement to benefit patient.
• Be inclusive and welcoming, and timely in your communication.
• Meetings to be held at a central, well-connected location.
• Give sufficient time for feedback on documents
• Don’t arrange meetings too early in the morning (difficult for patients/ carers to attend).
• Plain English – avoid jargon, it’s off putting if you can’t understand what you’re being asked.
• Being able to participate more by email or Skype would help due to my physical disability & pain needs.

If a researcher who you haven’t met before was setting up a new PPI group – how should they promote the group, so you would find out about it? What would make you feel comfortable and want to attend the first group meeting?

• Approach local and national related charities –they may know individuals or existing groups
• Use social media if appropriate –Facebook, twitter, Instagram
• Articles in magazines, local news/ media
• Advertise via local Health Trusts, GP Practices, Walk In Centres, Community Centres, Local Places of Worship (all faiths), Local Universities( Schools of Health/ Nursing/ Social Work).
• Use plain language in the advert – i.e., an opportunity to contribute to research
• E-mail people who have taking part or been involved in a previous project.
• Be aware that first meetings can be difficult for people, do what you can to make this easier- meet at the entrance, send a photo of yourself so I know who I am to look out for.

Return to the original blog post – Lessons learnt on the quest for meaningful and effective patient and public involvement.

Donna Littlewood (@donnalittlewood) has a PhD in psychology and is a Research Associate at the NIHR Greater Manchester Patient Safety Translational Research Centre, University of Manchester (donna.littlewood@manchester.ac.uk).