Myth busting in PPI
The research question is being honed, the methodology discussed, review of literature underway, meetings with your supervisor on resources and approach have taken place, in the back of your mind you have an ethics application to submit, then when you think you’ve covered all the bases someone mentions PPI …
The following list is a sample of questions I have received over the years from researchers who are new to PPI and don’t know where to start. My answers might not be the ones you find on the INVOLVE website but they are intended to help you think about what PPI is and how you might approach PPI for your research.
Where do I start with PPI? Is it just needed to get through ethics and funding review?
The NIHR, medical charities and other public funding agencies are keen to encourage and support public involvement and participation in research. If you approach PPI as something just to get you through ethics or ensure the funding comes in then you are missing the point. If you approach PPI with an open mind and are willing to listen to views and ideas expressed by those that might benefit from your research you will find that you have access to answers, support and advice that can and will enrich your work. See examples here
I haven’t got the budget or time for PPI; can’t I just ask a patient I know?
Well yes you can just ask a patient but their views might be skewed, perhaps in your favour, as you may be providing their care. If you really only ask one person they you will only receive one point of view.
We can help you with facilitation of a meeting/focus group, this can be low cost, refreshments and travel expenses only. Document review is less expensive and you will receive very valuable comments from a range of non-specialists keen to help you. If you want to work with a specific patient group we can help facilitate that meeting and arrange documents to be collated and reviewed. Once you have received funding for your research set aside budget, time and resource to support on going involvement.
It’s just retired people who have time to do this?
True many of those who volunteer are retired but what is so bad about that? Many have a lifetime’s experience in varied walks of life; some are parents and grandparents, carers, volunteers, ex-CEOs, retired truck drivers all with different experiences and knowledge that you can draw on.
Some research does needs the views of the affected patient groups who will be taking part and if that is the case then you need to do some leg work to find those groups. But again we can help, we have links with local patient support groups, cancer services, rare disease communities; and social media is really good in helping to identify organisations that can help you.
We are building and developing a Young Person’s Panel so if you want to know what teenagers think about your research come and ask us.
Using traditional models to gather views such as meetings and focus groups tend to suit a particular audience. If you want the views of other audiences go to them, attend community meetings, visit schools, or go to sports clubs.
My research is highly specialised the public really won’t be able to help, so why do I need to ask them?
Okay, so the research you are undertaking may only involve one interaction with a patient, the collection of a tissue or blood sample for genetic analysis. But who will decide on the benefit to patients and the ethical use of the material? How will you convince patients to take part? Your funder might want to know that patients and public are supportive of this work? All of these questions can benefit from lay input. You will need to be able to present your work in lay language to non-specialists on funding bodies or ethics committees. Patients will need to be convinced that what you are doing is worthwhile and of benefit to health research, and provide consent. Poorly explained and badly written research protocols rarely get funded.
PPI is not about asking non specialists to critique your research. We really don’t ask estate agents to comment on ‘cellular pathways’ and ‘biomarker identification’, but we do ask them if they were asked to take part in this study, would they and what information do they need to provide consent.
I’m scared I don’t know how to present to a public group. I’ve never done this before.
You are not alone. We meet researchers all the time who feel like you do, and most after giving a presentation or facilitating a discussion, report how much they enjoyed it. The representatives from the panel who review documents and attend focus groups are really keen to help you and are interested in your research. Ask for help, we can provide guidance on presentations & documents; be open and honest with the people you meet. No one knows all the answers and people do respect that.
I’ve been involved in a trial steering committee with patient representatives. It wasn’t worthwhile for them and I’m not convinced we need PPI in research.
Helicoptering people into committees where the focus is on the ‘day to day’ operations of conducting the research is not always the best use of your time or theirs. Think about other ways to gain their insight, it can and will be valuable, but you need to set aside time to think through what the questions are that patients/public can help with and how you might get those views. Less formal meetings over lunch or early evening in a public place can be just as meaningful. Picking up the phone to discuss questions as they arise or sending out surveys to collect wider views are all valid methods of obtaining input. Don’t be constrained.
The public might disagree with my research.
Yes they might. But here’s the thing, it is your research, at the end of the day as long as you have listened and considered their views then the decision on how to proceed is yours to make. People will respect a clear and coherent argument.
My PI thinks this is a waste of time.
This is hard one. Start small, perhaps think of an area of your research that could particularly benefit from patient input, perhaps you need support to push through a policy change, or patient support to get funding. Find others who can support you. You need to be ready for that ‘aha’ moment from your PI when having patient/public support was crucial to the success of a project. Track what your involvement activities were, what was your aim, what do you do, what changed as a result, what was the impact. Gather the evidence to support your approach.
Where is the evidence for PPI?
True there isn’t a lot in published papers and we need help from researchers to start recording their involvement and impact in their research publications. We have lots of case studies from enthusiastic researchers who tentatively entered the PPI arena and came out really surprised and pleased they did.
We’d like researchers to record the questions they asked, who they asked and their experience, and what changed as a result of the involvement. Being sceptical is good but remember PPI is like everything else in life, you get out what you put in.
Amanda Stranks, PPI Strategic Lead
Adaptable PPI, better for research, better for the public?
I read Dave Green’s blog with interest and admiration. I certainly recognised the enthusiasm and commitment to PPI, because such dedication is evident in many of the 51 public members who make up the Cambridge University Hospitals PPI Panel. We owe a debt to members of the public who give up so much of their time to PPI and need to ensure they receive feedback and thanks.
However, it is important not to place too much reliance on a small group of individuals. People who become so heavily involved can swiftly become the ‘informed public’ and the danger is that the genuine lay opinion could begin to disappear. Ideally we want to involve as diverse a group of people who access health services, and this is a real challenge.
In my years as a volunteer manager we were very aware of the dangers of over-involvement and recommended a maximum of one day a week for any specific volunteering role. There are always exceptions and these can work well, but they should be exceptions not the rule. Maintaining a balanced approach is healthy. Most importantly, we need to consider how we move PPI away from domination by professionals working with small groups of the informed public and into a much busier, adaptable, more transient environment. Members of the public should be able to come in and get involved briefly with a particular study that interests them, and then move on again. Such a model may be thought of as a turning wheel approach, where people are invited to step on, make their contribution and step off. Even a short exposure to the research process, if done well, will give people a good overview. They’ll tell their friends and family. Knowledge of why we do research will spread. When people understand that their commitment could be minimal and their genuine lay voice will be valued, more people with less time may feel able to join in.
PPI professionals who spend time out in communities, visiting diverse patient and community groups, are going to be more successful in these endeavours. If we are seeking to involve more people in PPI we must be prepared to go to them, rather than to expect people to come to us.
We all know the valid reasons for doing PPI well, working together almost always improve research, in fact I’ve never heard of PPI having a negative impact. The informed public make an excellent and worthwhile contribution, but there are many more people we are not hearing from. So let’s ensure that we are creating a variety of opportunities that will allow other voices to be heard. Isn’t it time to revise the way we work?
If you want to find out more about opportunities to get involved in research please get in touch.
Treena Becker, PPI Coordinator