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Finding PPI contributors – it’s easier than you think!
The most common question researchers new to public, patient and carer involvement (PPI) in research ask is: “But how will I find PPI contributors?” Here, Edel Murphy, National Programme Manager with the PPI Ignite Network, shares her advice.
When it comes to finding the right PPI contributors, think outside the box and use all your networks to connect with people - professional, personal, community, and social. Here I outline where to start and how to progress.
1. Identify the most important perspectives and lived experiences for your research
Your aim is to have the optimal mix of these to guide your team on the path to impactful research. Questions to ask at the outset are:
- Are you looking for patients, people living with ongoing health conditions, carers, service users and/or general members of the public?
- What perspectives are the most important for your research? For example, is it important to involve people of different genders, age, literacy levels, ethnicity or socio-economic status? It is important to include the perspectives of groups who often do not take part in research, and those who will need specific accommodations to enable them to take part in research.
2. Be clear about what PPI contributors will be asked to do
For example, let them know:
- What the time commitment will be
- Whether meetings will be in-person, online or both
- What supports you will provide to help them work with you.
3. Prepare to advertise your involvement opportunity
Communicate clearly, using no jargon, in a way that is appropriate for the audience. Beware of information overload at the start. Use different media. For example:
- Develop a visually appealing advertisement
- Draft a written document
- Produce a short video.
And be prepared to customise and adapt these materials for different audiences, and as you learn what works and what does not work!
4. Where and how to advertise your involvement opportunity
Don’t put all your eggs in one basket! Identify different pathways to find PPI contributors and follow them simultaneously. Here are the main ones to take:
Share your PPI opportunity via the PPI Ignite Network
Email hello@ppinetwork.ie with information the PPI contributors that you would like to find. The PPI Ignite Network publishes monthly e-zines, with a PPI Contributors’ Corner, which includes information about research groups who are seeking PPI contributors. The e-zine reaches a significant and continually growing number of PPI contributors, charities and other patient and community organisations each month. The Network is also developing additional ways to connect researchers with potential PPI contributors.
Seek help from charities, community and advocacy groups, and patient organisations to share your PPI opportunity
Identify the best contact point in each organisation and seek advice on how to most effectively invite members to get involved in your research. Many of these organisations have their own communication channels such as Facebook pages and newsletters. You could also consider asking these contact points about ways you can customise your advertisement to suit their audiences.
Some research charities have their own PPI groups, and are developing the capacity and skills of these contributors, who may be interested in working on your research. Examples include Family Carers Ireland and the Irish Cancer Society, as well as other organisations such as the Irish Platform for Patient Organisations, Science and Industry (IPPOSI).
If you are not aware of appropriate organisations in your topic area, check out the membership of umbrella organisations such as Health Research Charities Ireland (HRCI) and The Wheel, or search the Register of Charities.
Attend a meeting of a relevant charity, community or advocacy groups, or a patient organisation
If an opportunity arises to attend a meeting or informal gathering of one of these organisations, grasp it – you will gain invaluable understanding of the community, and may have an opportunity to talk about your involvement invitation.
Share broadly
You can do this with social media. Twitter is widely used by researchers, while community groups and patient organisations are often more active on Facebook and in WhatsApp groups. If possible, get the help of a community member to share your involvement invitation through the social media channels most relevant to that community.
You can also reach your audience more broadly with traditional print and broadcast media, both locally and nationally. However, you may be overwhelmed with the number of responses you receive, so establish a plan to handle this. It is important to be courteous to everyone who contacts you, and to be ready for many one-on-one conversations to develop a mutual understanding of what will be involved and what relevant lived experience the person has.
Take a targetted approach
You may need to take a targeted approach to achieve some of the diversity you identified as important for your research. For example, contact the local Men’s Shed if you are looking for gender balance, or a Foróige group for a young person. Or to include culturally or ethnically diverse perspectives, contact relevant community groups. Consider contacting organisations that encourage public participation, such as Public Participation Networks (PPNs). Family resource centres and local libraries are another good starting point, either to advertise with or to find out about other community-based groups that may be able to help you. For all targeted approaches, ask your point of contact what words or languages to use to customise your involvement invitation for that specific audience.
If you plan to embed a person with lived experience as an employee working as part of the research team, follow the advertising and recruitment processes is of your university or organisation to advertise a peer researcher post. Once advertised, use the points above to ensure the right people see your advertisement for the post – they may not usually keep an eye on potential job opportunities in universities.
5. Avoid the pitfalls
Finding PPI contributors is easier than you think, but there may be bumps on the road. Here is some advice on how to avoid them.
- Finding the right mix of PPI contributors takes time. Build this time into your schedule and into your communications with people who agree to get involved early in your search. Set clear expectations about a start date, giving yourself a realistic target
- Achieving the diversity you may need can be challenging. Remember that the people who are members of patient and community organisations may not always reflect the diversity of a community, so targeted contact with individuals, through a trusted source, may be required
- Be prepared to be oversubscribed. How will you decide who to involve? How will you decline people? Remember, finding PPI contributors is typically not like a job interview. You are asking people, often with vulnerable aspects in their lives, to get involved. Consider advice from voluntary organisations on how to decline offers of involvement in a positive manner
- Build up your communication skills before embarking on this journey – communication is key
- Confidentiality matters. Individuals may share personal information with you during initial conversations, but PPI contributors are not asked to share personal information when working with a research team.
ENDS
About the author:
Edel Murphy is the national Programme Manager for the PPI Ignite Network. She focusses on the development and growth of an energetic, collaborative and innovative Network, bringing together a diverse range of stakeholders nationally and internationally to build a shared voice for PPI in research in Ireland. Edel facilitates knowledge exchange and sharing of skills and expertise across all involved in the Network; conducts wide ranging engagements and two-way dialog with numerous and diverse partner organisations; curates the Network’s online hub and coordinates the Network’s communications and the Network’s recently-established Public Advisory Board. You can contact Edel by email on edel.murphy@nuigalway.ie.
Read more about HRB funding of the PPI Ignite Network
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Visit the PPI Ignite Network website