If you are a Researcher or Policy Writer, you need to get serious about Patient and Public Involvement or PPI.
Patient and Public Involvement, also known as PPE – Patient and Public Engagement, has become more widespread lately.
It is no longer acceptable (why was it ever?) for organisations; bosses, politicians, researchers, and healthcare professionals to make decisions about us, without us. People in positions of power, if you’re not asking about our lived experience, if you’re not listening to our stories, in whose name are you working? Are you really the experts here?
These sorts of scenes are just not acceptable:
Why should a researcher or policy writer embrace PPI?
Aside from the fact that PPI is often a prerequisite in gaining funding for projects; if you are a researcher or policy writer, engaging with your audience (or a select group of representatives) at the outset has some very tangible benefits.
- There’s a good chance that if you’ve overlooked something, people with lived experience will spot it. It’s our lives you’re talking about after all; we’re literally the experts!
- You can get the language right. You’re much less likely to draft something patronising, presumptuous, implausible, or antagonistic if it’s co-written/proofread by members of the intended audience.
- You’ll understand what’s important to us; what floats our boat and what gets our goat. If your clients connect with what you’re saying, they’re more likely to listen.
- If you want us to listen to you, it’s only reasonable that you hear us too! The empathy will show in your work.
- Getting the language and tone right in documents encourages staff to do the same in their interactions.
- Engaging with your audience at the earliest stages means you’re asking the right questions at the outset.
I’ve read so many hospital policies and research where it’s clear no representation was present at planning, drafting, or proofreading stage! It’s very easy for phrasing to become ‘us and them’, paternalistic, and ‘we know best’ in style when you’re external to the group in question. There are very few people for whom that sort of language yields the best engagement!
Remember, the language you use feeds into the psyche of staff; like it or not, they’re following your lead! So if you are positive, their rapport building is likely to be easier and their work more collaborative. If you are negative, the opposite is more likely to be true.
How to find your audience
Therefore, if you want to do best by your clients, you need to get your audience involved, preferably as early as possible in the project. But how do you recruit? If you’ve tried putting up posters and putting a link on your website and that’s not getting you anywhere, what next?
Former service users may have even more insight than current ones, but are less likely to see your invitation. If it’s too costly or you don’t have permission to contact previous service users directly, could you advertise in baby and toddler groups, at well baby clinics, with health visitors etc?
Are the service users you involve sufficiently representative of the diversity of your clients? Do you need to try thinking more out of the box to reach more of the people you should be speaking and listening to? What other local organisations might you be able to contact for their input?
If you’re a Researcher or Policy Writer seeking participants
If you’re looking to recruit, time allowing, Big Birtha is always happy to give an opinion, and in the BigBirthas Facebook Group we have around 1,000 members from which you could recruit participants. Or if you just want to ask a few general questions, and sound out some ideas we could facilitate a Q&A style open meeting and see what happens. We’re passionate about this stuff, and changing maternity services for the better!
Just get in touch via this link:
Explain what you’re up to and we can discuss how Big Birthas can get involved to help you make your next project as engaging as it can be; which is in all our best interests. But please, check out the NIHR guidance first on appropriate remuneration for lay participants!
Have you considered why people aren’t engaging?
Is your signing up /registering an interest process quick and easy? Are you clear about what you’re asking/offering, and who the work will benefit?
At the outset, offer clear information for members of the public explaining what they are being offered, how they will be paid, how their involvement will be acknowledged, how much time, preparation, and effort will be required, and what actions they need to take. If people know what they’re signing up to, they’re more likely to want to get involved.
It something super simple like the time you’re trying to connect? Avoid daytimes and particularly the school run, provide creche facilities, or reimbursement for childcare. For in person meetings, make sure parking is good and preferably free, or provide a permit in advance, and check there are good public transport links.
Are you offering expenses or any incentive for people to give you their time and effort? If not, why not? Are YOU working for free? have a look at the helpful NIHR guidance on public involvement, including suggested rates of reimbursement:
offer payment at a level that is commensurate with the nature and demands of the activity and is fair when compared to other members of the research team, to acknowledge the value placed on public involvement
National Institute for Health Research – Good practice for payment and recognition – things to consider
If you are not able to offer expenses or an incentive (if it’s for a PhD thesis, for example) you should consider that this will likely negatively impact the diversity of those able to contribute their time.
Consult with members of the public about how they would like to receive payment or acknowledgement for their contributions. Some will be more than happy with a £20 voucher for an hour of their time, for others, this offers unnecessary complication – cash or a direct bank transfer would be better. Where possible, being flexible when offering payment and recognition is key, as individual circumstances may change.
Reimbursement of expenses should be processed promptly, and where practical in advance, to avoid participants having to wait for reimbursement. Don’t forget to offer support to members of the public in the form of documentary evidence of any payment for involvement or expenses, so that they have information to provide to tax or benefits authorities.
But if you’ve read this far, thank you! Over the past couple of years, several organisations have approached BigBirthas for input at the planning stage of projects. This is great news for everyone involved as it’s much easier to get the tone right at the start of a project, than change it part-way through!!