Patient and Public Engagement

Let’s talk about PPE. No, not *that* PPE, I’m talking about Patient and Public Engagement, also known as PPI – Patient and Public Involvement!

I’m pleased to announce that lately, organisations have been approaching BigBirthas to get involved in projects at the planning stage. This is great news!!

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:

Engaging with your audience (or representatives of it) at the outset has some very tangible benefits.

  • There’s a good chance that if you’ve overlooked something, service users will spot it. It’s our lives you’re talking about after all, and 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. Honestly, if you want us to listen to you, it’s only reasonable that you hear us too!
  • 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 approach yields the best engagement! Even worse, that language feeds into the psyche of those acting on your words.

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 your service users? If you’ve tried putting up posters and putting a link on your website and that’s not getting you anywhere, what next?

Reach out.

Former service users may have even more insight than current ones, but are less likely to see your invitation. If it’s too costly to contact previous service users directly, could you advertise in baby and toddler groups, with health visitors as well as maternity clinics? What about maternity voices partnerships?

Are the service users you do engage 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?

Have you considered why people aren’t engaging? Are you offering expenses or any incentive for people to give you their time and effort? Is 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, and there are good public transport links.

Are you clear about what you’re asking/offering, and who the work will benefit?

If You Represent An Organisation

Big Birtha is always happy to give an opinion, and is on several advisory and oversight committees already. If you want more than one person’s input (you really should!) we have a BigBirthas Facebook Group of 300+ 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, so you’re likely to get some great engagement!

Just get in touch via the Contact Big Birtha 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 of our best interests.

Your experiences and opinions are needed!

Hi lovely people! It seems I’m inviting you to take part in research once again! This time, your experiences and opinions are needed by Queen’s University Belfast. The researchers want to know people’s views on excess weight in today’s society.

They’re particularly interested in hearing from people who’ve been pregnant.

If you’re experiencing research survey fatigue, I apologise! It’s a really positive sign how far we’ve come that researchers aren’t just looking into issues around high BMI, but we’re regularly asked questions about our views on the subject too.

I advocate getting involved in as much research as possible that looks at our experiences, and gives us a platform. This is why I regularly publicise research on here.

As I see it, the only way to effect change is to make our voices heard. Your experiences and opinions are needed so the people making decisions know what’s really happening, and what we think about it! Change is slow in coming, but it is coming, and you can help make it happen!

Queen's University Belfast logo - Your experiences and opinions are needed!

Here’s the blurb:

Your experiences of having excess weight in today’s society

Have you ever had excess weight? Would you like to share your experiences and opinions?

Researchers at Queen’s University Belfast invite you to complete a questionnaire about your experiences of excess weight and your opinions on different terms used to describe weight/size.

We are looking for men and women who are over 18 years old to complete the questionnaire. We are also particularly interested to hear about the experiences of women who are or have been pregnant.

Please click on the link below to find out more about it and to complete the questionnaire: https://qubpublichealth.fra1.qualtrics.com/jfe/form/SV_2nUDx0DJGg8kFKZ.

They say the survey should take about 15 minutes.

Image courtesy of the World Obesity Federation
Image courtesy of the World Obesity Forum

Are You A Researcher?

Are you looking to publicise your study, or trying to find participants?

BigBirthas.co.uk is always happy to publicise relevant research on the topics of BMI and pregnancy.

Are you struggling with working out what terminology to use? Do you want to check you’re not missing something with the people your research actually concerns? Want to just check your thoughts and assumptions with some people with lived experience of the thing you’re studying?

If you’d like to run a focus group, we can help with that via the BigBirthas Facebook group.

It’s a friendly, welcoming space for people to discuss the issues surrounding higher BMI pregnancy. There’s healthcare professionals and doulas on board, as well as people who are, have been, or would like to be pregnant. We’re also happy to facilitate Q&A sessions. It’s generally better if these happen in the evening once children are (theoretically at least) in bed!

If you’re looking for members of an oversight committee or similar, we can probably help with that too. Lots of our members have experience with conducting research!

You can get in touch via the Contact BigBirtha page.

No excuse for COVID-19 review delay #BlackLivesMatter

The BigBirthas site has been reasonably quiet on subject of Covid-19. The situation is changing so rapidly, every time I find relevant research, it seems it is almost immediately contradicted. I don’t want to add to anyone’s confusion. But the news reported today by Sky that the review into affects on the BAME community is on hold because of protests is unacceptable. There is no excuse for COVID-19 review delay. #BlackLivesMatter.

Responding to the delay, shadow equality secretary Marsha De Cordova said: “BAME communities need answers.

There is a gross irony in delaying the release of a report into the unequal suffering of the BAME community, on the basis of global events that relate to the suffering of black communities around the world.

If anything, recent events make the release of this report all the more urgent. If the government is serious about tackling racial injustice, they should not be shying away from understanding into why these injustices exist.”

I can’t say it any clearer than that. To deliberately hold back this information because it might be politically sensitive beggars belief. It precisely shows why the #BlackLivesMatter movement is so important. People’s lives are not pawns in a political game. People need this information and they need it NOW.

There is no excuse for COVID-19 review delay. #BlackLivesMatter.

***EDIT***

The report has now been published. It’s underwhelming.

It doesn’t really offer much useful info for anyone who is concerned. It shows correlations between ethnicity, obesity and other factors with severity of COVID-19, etc. but nothing more than providing data on that which has already been widely observed. Nothing useful is offered in the way of advice.

If you like data, this study of 17million adult NHS patients is impressive, as with such huge numbers, they’ve been able to better adjust for confounding variables. It just hasn’t been formally released yet as it’s undergoing peer review at the moment:

https://opensafely.org/outputs/2020/05/covid-risk-factors/

Research Continues!

The world may have practically stopped in a lot of ways, but behind the scenes, research continues! The ever-effervescent WRISK Project is attempting to map all the COVID-19 pregnancy research that’s happening right now. Anyone doing research in this field is invited to add their project details to their google doc: http://tiny.cc/pregnancyandcovid19.

BigBirthas has also had contact from quite a few academics and researchers. They are continuing with pre-COVID-19 research and need our help. There are a few in the pipeline I’ll be publicising soon. I can’t share all the details of the other projects yet, but I can remind you about the LARC Project, which I brought to your attention in January, and which would now like you to complete a short survey, if you’re able:

LARC Project Research Continues

Image showing forms of LARC (long-acting reversible contraception) and Lancaster University and BPAS logos along with the words "Have you been encouraged to use LARC?" - their research continues

LARC stands for Long Acting Reversible Contraceptives, things like the implant, coil or IUD, injections etc. This is being run by the British Pregnancy Advisory Service (BPAS) in conjunction with Lancaster University.

They’re interested in hearing about people’s experiences with LARC or LARC services. If you take part in their short survey you can win a £20 High St voucher. (it says it takes 10 minutes to complete, but I think that’s an exaggeration, it took me much less!)

You do not need to have used a LARC type of contraception to complete this survey. They’re interested in your experiences with the services that provide LARC. It doesn’t matter whether you have tried the methods or not.

I’ll let you know more about the other research projects and how you can help and get involved as I know more myself.

Until then, stay safe.

x
Big Birtha