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We've arrived in #Birmingham and we're set up & ready for our first expert panel meeting! Really grateful for our experts' time - excited to meet them and share our findings! #WRISK
Our @clareemurph kicks off the day by asking - why talk about risk? Our initial workshop way back in 2017 identified several concerns - a culture of blame; increased surveillance of women; and a problem with the "better safe than sorry approach", to name a few. #WRISK
@clareemurph #WRISK project was formed on this basis - to understand the complexities of women's needs & to find ways to better accommodate them
And now Olivia Marshall, the media guru at #WRISK, is presenting her work on understanding how risk gets reported along the “study to story” pathway
We were interested in describing the breadth and depth of the stories about risk and pregnancy that reach the mainstream media and contribute to the cultural climate #WRISK
Our research has shown that media headlines tend to have a greater focus on maternal risk factors and offspring outcomes #WRISK
How accurate are the headlines?🧐 We looked at how faithful press releases were to the original studies, and in turn, how results were communicated by media outlets.
@rbcca_blaylock is now presenting our findings from the VOICES work stream of #wrisk. What are women's lives experiences of navigating the risk landscape to make decisions? Which areas do they think are well communicated - or not?
@rbcca_blaylock We started off with a survey. We wanted to engage with women directly to see how interested they were in talking about this topic, and what their experiences had been. We received nearly 8,000 responses from women wanting to talk about their pregnancies. #WRISK
@rbcca_blaylock We achieved a wide spread of women responding, in terms of geography, education level, ethnicity, socio-economic status etc. A very high proportion of women were interested to participate in further research too. People want to talk about this #WRISK
@rbcca_blaylock The next stage was narrative interviews with women. We wanted to learn more about their pregnancies & experiences, and how they feel about some elements now, looking back #WRISK
@rbcca_blaylock We spoke to 34 women in detail, from a wide geographic distribution & 29% from a BAME background. Many of the women we interveiwed had complex reproductive histories or fell into more than one "risk category". Again response rate was high and v few were lost to follow up #WRISK
@rbcca_blaylock Many of these women had positive experiences of communication on risk, and reported that specific issues had been communicated to them clearly by their healthcare professional or another source #WRISK
@rbcca_blaylock Women also don't necessarily object to the "better safe than sorry" precautionary approach. They understand that it has a place. But they also said this shouldn't preclude access to full information on risk and evidence. Both can go hand in hand #WRISK
@rbcca_blaylock Some women had a low appetite for risk, especially if they had had bad experiences in the past. One woman who had had repeat miscarriages wanted to be cautious in her own pregnancy, but she also acknowledged her approach wouldn't be right for all women #WRISK
@rbcca_blaylock So what impact do risk messages have on women? Some reported feeling judged and worried about their everyday habits such as consuming caffeine. #WRISK
@rbcca_blaylock Others felt anxious, especially if they were powerless to change the risk factor in question. One woman brought up a study about the negative impact of maternal stress during pregnancy. She said she was already stressed and this compounded her anxiety #WRISK
@rbcca_blaylock On some issues, though, women said they would have liked *more* information. Mental health was top of this list by a long way. #WRISK
@rbcca_blaylock Women talked about transparency in their relationships with healthcare professionals. Some thought their HCPs used statistics to push them towards a certain birth method, to discourage them from taking medication, etc. One woman said she lied to her midwife as a result. #WRISK
@rbcca_blaylock Women who needed medication during pregnancy were sometimes denied by HCPs, given conflicting advice, or told they were putting their baby at risk. Women struggling with their mental health were told they couldn't have antidepressants because they were pregnant #WRISK
@rbcca_blaylock Women with #hyperemesis were told they couldn't have medicine, or were prescribed it but simultaneously told not to take it #WRISK
@rbcca_blaylock A woman with asthma told us she stopped taking her inhaler because she was anxious about harming her baby. She eventually began taking it again after coughing up blood #WRISK
@rbcca_blaylock Women with high BMIs said discussions about their weight had dominated their interactions with HCPs, even if they had lost a lot of weight prior to becoming pregnant. #WRISK
@rbcca_blaylock Women with high BMIs repeatedly talked about feelings of dehumanisation, feeling like "less of a person" because of their weight in their interactions with HCPs #WRISK
@rbcca_blaylock Women also felt blamed by HCPs for being overweight if their pregnancy ended in a poor outcome. #WRISK
@rbcca_blaylock There were, however, lots of really positive reports of interactions with healthcare professionals. They said they were given good information to understand the risks, the opportunity to make choices, and really good advice. #WRISK
@rbcca_blaylock Important to consider too that HCPs are under increasing pressure in a rigid system. We don't have their voices here, but one HCP told us her appointments are time pressured and the obligation to tick certain boxes means individualised care is more difficult #WRISK
It is over to our expert panel this afternoon! They’re discussing our results in light of their own experiences to work towards solutions to make things better for women. They’ll be sharing ideas shortly 💡 #WRISK
FIrst up it's our experts on the media and the communication of risk in the science community and beyond. There are problems all along the risk communication pathway - what gets funded, what do scientists want to study, what do press offices push out, the list goes on #WRISK Image
There are however several organisations pushing back & leading the charge on responsible risk communication. Winton Centre, Science Media Centre, @senseaboutsci, etc... #WRISK
@senseaboutsci In the preconception period our experts say that framing is key. When and how should HCPs approach the subject of obesity, for example? #WRISK
@senseaboutsci Language matters too. Emphasise the positive as well as the negative. Avoid stigmatising language and negative names - e.g. "healthy pregnancy clinic" better than "BMI clinic" #WRISK
@senseaboutsci We shouldn't restrict women's access to medicines that would help them on the basis that one day they might become pregnant. This is an overstepping of the role of HCPs #WRISK
@senseaboutsci Among women of reproductive age there are those who definitely want to become pregnant, those who definitely don't, and a spectrum in between. How do we account for all that? Taking this to the extreme the Q becomes "how non-pregnant would you like to be?" #WRISK
@senseaboutsci But also - women's health and pregnancy planning aren't just individually determined. There are so many other determinants. Environmental factors, socio-economic factors, housing, education, availability of healthy foods...the list goes on and on. #WRISK
@senseaboutsci So what about pregnancy itself? There are so many sources of information, how do women make sense of it, and what is important to them? #WRISK
@senseaboutsci There's the crucial issue of time pressure and the rigid structures in which HCPs operate. How do you provide individualised care in that context? #WRISK
@senseaboutsci HCPs are humans too, with their own values and influences on their knowledge base. #WRISK
@senseaboutsci Some things that would help might be better access to evidence base for HCPs. NICE guidance is useful but could they also have access to a portal for evidence behind the guidance? #WRISK
@senseaboutsci Again, language is important. Suggestion we should move away from discussions about "risk" altogether, & instead talk about "decision making" and "supported decision making" #WRISK
@senseaboutsci There is a tendency to focus on maternal *behaviour* rather than other health determinants, for example environmental. Why are we so much more concerned about women smoking than about women breathing polluted air, for example? #WRISK
@senseaboutsci Postnatally, our experts wonder whether there is still a disproportionate preoccupation with maternal behaviour, even though arguably there are multiple people who may have influence over the baby's outcomes at that point #WRISK
@senseaboutsci Even the meaning of the word "risk" is fraught and has come to be synonymous with "danger". We no longer see relatively minor changes as minor; an element of nuance has been lost along the way. Do we need different, less loaded language? #WRISK
@senseaboutsci Lastly our experts had some thoughts on the research culture- what is researched; what is published? Funding decisions; publishing decisions; hiring decisions; communication of the research - all these things play a role #WRISK
@senseaboutsci What determines the research agenda? This is disjointed. Individual researchers seek individual funding. There's no overarching national plan. Limited capacity affects prioritisation and "return on investment" influences decisions #WRISK
@senseaboutsci Under-researched areas include paternal factors, societal factors, the prenatal and postnatal factors... list goes on #WRISK
@senseaboutsci There are also considerations of "research impact" and impact agendas - research should be made relevant to wider society. This is favoured over publication for its own sake #WRISK
@senseaboutsci So a range of influences on the reserach agenda. Suggestion that public and patient involvement could be a helpful solution for feeding women's needs into it #WRISK
@senseaboutsci And here concludes our first workshop! Stay tuned for more... #WRISK #weloveexperts
.@clareemurph is now introducing the next workshop, our final of the day. We are asking our group to come up with some overarching principles to underpin risk communication in pregnancy that we can all sign up to 📝 #WRISK
So, what are some of these potential principles? 👀
First up: we need a balanced approach to benefits and harms; collaborative decision making that respects women’s values and lives
We need to trust women and their families to make decisions right for them... and we shouldn’t use population level statistics to infer an individual’s risk of something happening or not happening! #WRISK
Next up: relative risk needs to go out the window! 👋🏻#WRISK
We also need to recalibrate our systems to work out WHAT risks we focus on in our conversations
We need to 👂 as well as 🗣 and assume women have the competence to understand what HCPs are talking to them about
We should recognise that different individuals and groups use different language and ways of speaking and accommodate for this in literature, conversations and graphics #WRISK
Let’s try look at positives rather than the negatives- e.g. what are the chances of something not happening?
We need to remove the individual burden of risk from women and address social and commercial determinants of risk #WRISK
We need to change our language from “this is what you have done wrong” to “this is something positive that you could do” #WRISK
We need to repersonalise risk information and conversations: what does this mean for the woman in front of you, not the population as a whole, and crucially- what matters to HER?
We need to be equitable in what we do - there are particular groups who disproportionately impacted by risk- it isn’t about treating everyone equally
Women are the decision makers, we should ensure we are able to support her to make the best decisions, and to equip HCPs in helping her to do so
And finally, “risk information is there to inform NOT to persuade”.
We’ve had amazing, honest, and thought provoking input today on our study and results, on solutions, and on guiding principles. Keep your eyes peeled for news of the next stage where we will be doing the same process with women themselves.
Thanks to everyone who made the journey (some of you came a long way), and to our funders who have made the work possible! @wellcometrust
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