Earlier this year, I discovered that I was pregnant at 40. After such a long time spent successfully managing my fertility, it was a great surprise. Having taken the best part of a decade off from paid work as a teacher to raise three children (who are now well on their way to becoming teenagers), falling pregnant now – right as I have reclaimed a small portion of my independence as a mother – was not on ‘the road map’ by any means.
Courtesy of the advocacy work I had previously undertaken regarding abortion decriminalisation and the diminishment of abortion care services in South Australia, I knew that I could ring the local pregnancy advisory centre to book an appointment without a referral. I was thankful for this option, though not entirely sure I wanted to proceed with it. As luck would have it, an acquaintance contacted me the same day to say she had also taken a pregnancy test that morning and discovered that she was also carrying an unplanned pregnancy. However, unlike me, she was unsure of where to go or to whom she should speak – her first port of call was to discreetly ask a friend for help.
What neither of us was prepared for was a waiting time of 3–4 weeks for a termination. Unfortunately, we South Australians are still awaiting the new health regulations which will allow providers to offer care that reflects new, decriminalised abortion legislation. As a result, once Omicron hit over Christmas, the requirement for women to attend a hospital setting for abortion care added further strain to a system that was already under pressure. During this agonising wait, I – like my acquaintance – found myself reaching out to easy-to-access care providers, such as local midwives and my GP, and a range of close friends. Whilst the medical professionals could talk me through what choices I could make, the information I sought from women was more about how I could make the choices I needed to make in coming weeks; having never experienced an unplanned pregnancy before, being able to call upon others who had ‘been there, done that’ before me was immeasurably valuable. From these trusted women, I heard stories of their own unplanned pregnancies, medical or surgical abortions, and blended families with ‘surprise babies’ and large age gaps between siblings.
In many cases, these women had not shared this information before, and whilst I was the beneficiary of them sharing their experiences, they also benefited in being able to tell their stories to someone in a similar situation. I learnt a number of things about what level of care to expect from the termination clinic, how having an extra child in a family of older children can ‘work’, and – most importantly – I was reminded of how much practical support I had around me, if I needed it. Ultimately, it was the sum of this information – which is highly personal and cannot be found in a brochure or set of guidelines – that helped me to decide that, crazy though it objectively was on every count, I would proceed with the pregnancy.
Unfortunately, at nine weeks, I instinctively knew something was wrong. A viability scan confirmed that I had had a missed miscarriage. Once again, I began researching online, speaking to friends, and consulting medical professionals to understand not only what to expect in the coming days, but also how to prepare for the experience physically, emotionally and spiritually. Much of the information of greatest value to me during this process again pertained to a far bigger picture of decision making than I could find in any single source.
In March, I conducted an online survey called ‘Learning About Women’s Health’ to collect experiences from consumers of women’s healthcare relating to the topic of ‘lifelong learning’. I share this personal experience of mine because, based on survey results, it is a perfect example of how women learn and share information about their own health across their lifetimes. By starting the conversation and listening to lived experience, we can identify the key factors in how women learn, we can replicate some of this ‘secret sauce’ in women’s health education, and the education of women’s health providers and educators.
The survey received 30 responses from women (ie. consumers of women’s healthcare identified as female by reproductive sex) living in Australia and New Zealand. These respondents were aged from 25 to 65+, with 70% between 25 and 44 years of age. When asked to describe how well they generally know their own bodies, 82% responded that they know their body either quite or very well. By contrast, when asked if medical professionals well understand the female body generally, 75% of respondents answered ‘No’. Of interest here is how women come to learn about their female bodies to the positive extent indicated if their confidence in the knowledge held by medical professionals is so low.
Noting the age of the respondent cohort, the role of ‘personal experience’ emerged as integral to learning about their own bodies over time. In terms of the biggest influences upon a woman’s current understanding of her body, these may include: ‘studies, research and science’ (76.2%), ‘what other women have shared with me’ (73.4%), ‘my understanding of my family history’ (69.6%), and ‘what medical professionals have told me’ (68.8%). However, the strongest influences upon this understanding are: ‘how it feels’ (92.6%), ‘my experience of my body over time’ (91.8%), and ‘what I instinctively sense’ (86.6%). As one respondent reflects: ‘It’s not until something happens that I’ve learnt [about it]. Not ideal in many circumstances!’ Similarly, another respondent said she has learnt ‘By living in it! Going through puberty, menarche, experiencing menstrual disorders and fertility delays, experiencing pregnancy, birth, breastfeeding, [and] weaning.’ Whilst these answers relate to previous learning, when women want to learn more about their body – and 85.7% indicated they still do – they turn to personal research (95.2%), their GP (57.1%) or a friend (52.4%).
In both reflecting upon their current knowledge base and how they would continue to expand this, survey results reveal a theme of personal autonomy which underpins the consumer’s knowledge of her own body. She is the agent of her own knowledge base, her experience of her body is her primary source, and she learns to source and integrate an ecosystem of information from multiple secondary sources, including medical professionals and peers. Indeed, this mirrors my own natural process regarding decision making around unplanned pregnancy and termination.
It is interesting to ponder whether the tendency towards ‘learning by doing’ or ‘just in time’ learning is indicative of a fundamental truth regarding women’s health education (ie. that some things cannot be learnt or taught until they are experienced), or whether learning from experience is a natural consequence in a society that does not teach what women need to know. One respondent noted that ‘there’s a huge gap in women’s education for the general population between high school and getting pregnant,’ and of the education women have accessed via school programs, another respondent reflected that ‘education as a young woman centred around not getting pregnant’. Both observations suggest that there is a knowledge gap for women’s healthcare consumers that is not currently addressed by existing systems.
To further explore the details of this knowledge gap, one theme that emerged in answer to the question, ‘What do you wish you had known about your body before now?’ was ‘hormones’ (28.6%). This included women finding benefit in knowing, through experience, the role of hormonal cycles in overall health, and vice versa. Regarding the things women wish they had known about their bodies before now, 23.8% reported that they did not learn about this previously because it was not talked about, and 19% said it was not taught to them. This raises the question of whether working to reduce social stigma is as important as offering formal education in women’s health. Nonetheless, respondents indicated that, if they were to be taught these things, the best person to have done so would have been their doctor or medical professional (57%), a mother/mother-like figure (47.6%), and peers (42.9%). The sense of a healthy ecosystem of ‘education points’ within personal, medical and social networks is evident in this picture. Indeed, only one third of respondents believe that the thing they wish they had known about their bodies before now could have been taught by ‘no one – I needed to learn it myself’.
The greatest opportunity to proactively address this education gap for the cohort surveyed currently appears to be in relation to matters of perimenopause, menopause and post-menopause. Consumers indicated an overall lower confidence in their understanding of these topics as compared to those relating to earlier stages of the female reproductive lifecycle – 30% reported a low understanding of perimenopause; 26% provided neutral responses and 26% reported a low understanding of menopause; 37% reported a low understanding of post-menopause. Given the average age of respondents, this is consistent with the ‘just in time’ nature of women’s learning and the likelihood that those surveyed are not yet in this phase of their reproductive lives.
Before pondering possible solutions to this knowledge gap, we must recognise there are two distinct issues that deserve further discussion. Firstly, women need to be better supported access the formative education they need to make better sense of the ‘just in time’ learning represented by the ‘feelings’, ‘experiences’ and ‘instinctively sensed’ information they derive from their own bodies, and the information they glean socially from peers. Secondly, medical professionals – from whom women believe they could have learnt what they needed to know, and to whom these women will turn when they want to learn more – need to be better positioned to potentially deliver this service to women as they build knowledge ‘ecosystems’. The effective education of healthcare consumers is a worthy investment in preventative medicine and better outcomes.
It is my view, both as an advocate and educator, that both issues can be solved for the benefit of consumers and clinicians alike by emulating knowledge ecosystems and working in collaboration to deliver medical education. Whilst this is not a new idea (as an example, the Royal College of Psychiatrists NHS guidance1 contains a literature review of the involvement of patients with lived experience in teaching and learning within Medicine), its uptake within women’s healthcare in Australia and New Zealand by training and accreditation organisations, such as RANZCOG or the RACGP, would offer significant, multi-directional value. The direct sharing of patient stories makes education memorable and powerful, meaning that medical students are more likely to remember key messages.2 Furthermore, if women’s shared stories represent not only the culmination of lived experience but also the knowledge gained from speaking to other women, this opens a portal to more universal experiences with potential transferability in practice. With 70% of survey respondents indicating that they would be prepared to share lived experiences as part of medical or professional training for women’s healthcare, there may be ready appetite within the consumer community to provide this kind of resource. Indeed, as my friends reported to me during my unplanned pregnancy ‘reconnaissance’, such sharing is mutually beneficial; whilst medical students may experience more powerful learning, the consumers who provide lived experience education also report benefits, such as feeling empowered, a raised sense of self-esteem and improved understanding about their own health.3
This said, we know that merely involving consumers as teachers of existing women’s health curricula is not the whole answer in and of itself. Where collaborative medical education exists, there can be a tendency towards using the lived experiences of consumers to ‘flesh out’ existing academic or professional knowledge and theories, rather than to use patient experiences to expand knowledge and challenge orthodoxy.4 Much like consumers, educational institutions run the risk of ‘not knowing what they don’t know’ without consistent and direct conversation with the communities they ultimately serve; where clinical education is not cognisant of consumers’ lived experiences, blind spots can form (which make consumers’ perceptions of clinical knowledge worse). However, the ‘business case’ for pushing beyond this level of patient involvement in education can be extremely hard to make without significant support.
Given the high degree of experiential learning reported by consumers in the survey (who report that they know their bodies well or very well), perhaps there may be greater value in introducing the concept of ‘consumer knowledge’ with a view to teaching about it in its own right. This enquiry would not only add further dimension to medical perspectives of the female body, but its process could be an opportunity to co-design, co-deliver and co-assess new curriculum modules in women’s health for the purpose of addressing the knowledge gap on both sides of the clinician-consumer fence. By teaching the clinicians both what consumers need to be taught and what consumers believe clinicians need to be taught (either conceptually or directly), clinicians will be better placed to impart relevant, useful knowledge when women ‘don’t know what they don’t know’, but could benefit from having access to this information ahead of time.
Whilst this may sound like a futile task of dubious value to some, and ‘out of scope’ to others, the Collaborative Pairs model – which was started by The King’s Fund in the UK and has been subsequently used elsewhere (including Australia) – offers a framework for clinical and consumer ‘pairs’ to work together to design such pilot initiatives to improve outcomes.5 In organisations that are already committed to providing the highest standards of healthcare via a culture of lifelong learning and have established consumer networks of trusted representatives, this process is even easier to initiate; the hard work of cold canvassing consumer communities and creating engagement funnels has already been done. Where the value of the consumer perspective is part of ‘business as usual’ in an organisation, inviting consumers to participate as partners in matters of education often becomes a natural evolution of the process of working together to improve outcomes. Just imagine the positive health outcomes for consumers that may flow from asking, ‘What do you wish you had known?’, if we commit to proactively providing the answer to tomorrow’s clinicians and consumers through education.
- Royal College of Psychiatrists. Learning from Experience: Working in Collaboration With People With Lived Experience To Deliver Psychiatric Education. 2021. Available from: www.rcpsych.ac.uk/docs/default-source/training/letb/pcitguidance-(002).pdf?sfvrsn=7465445a_4
- Jha V, Quinton ND, Bekker HL, Roberts TE. Strategies and interventions for the involvement of real patients in medical education: a systematic review. Medical Education. 2009;43:10-20
- Royal College of Psychiatrists. 2021. Online, p.6.
- Royal College of Psychiatrists. 2021. Online, p.6.
- The King’s Fund. Patients as parthers: Building collaborative relationships among professionals, patients, carers and communities. 2016. Available from: www.kingsfund.org.uk/publications/patients-partners