Personalised care, representation and improving data: Reflections on the Women’s Health Summit

Summary

I am passionate about women's health and have worked with campaigners, clinicians and patients for a number of years to look at the barriers that women face in receiving safe care and the challenges clinicians face in delivering it.  

We know the medical system has historically been based on the white, male patient which has led to huge gaps in knowledge and understanding around women's health. But we are not just playing catch up to address past racism and patriarchy that is embedded in the system, we are continuing to highlight and fight it where it still exists.  

On Saturday I attended the Women's Health Summit, organised by Five X More. It was a powerful event, designed to look at aspects of women's health throughout their life journey. Attended by mums, charity representatives, media, clinicians, patients, leaders and more, united by a desire to change things.  

I laughed, I talked and I cried.  

One of the final calls to action of the day was to find your skill, find your voice and do more.  

So, I start where I am most at home - in writing. 

Content

"How could we have predicted this outcome better in you?"  

This was one question that has lingered with me since the Summit, raised by Dr Helen O'Neill. 

Why this question in particular?  

Because, if we are able to gain a deep understanding of the factors that contribute to good or bad outcomes, we will be better placed to assess individual risk and adapt practice to make sure all women receive safe, culturally sensitive and equitable care.  

In this blog, I look at this question in relation to four key themes that came up throughout the day: 

• listening 
• personalised care 
• embracing digital solutions 
• improving data and knowledge 
• representation 

Listening  

Actively seeking and welcoming insights from those with lived experience or most affected by a healthcare service seems common sense, and yet it remains poorly embedded. Hearing and elevating the voices of patients and collaborating for safety was touched on many times throughout the day.  

Kate Brintworth, Chief Midwifery Officer for NHS England talked early on about the need to listen more to women, reflecting that maternity services had not done this well enough to date: 

"We need to step out of the space of being the 'expert' and become the partner." 

This was echoed by others, who also highlighted the negative responses women can get when speaking up or advocating for themselves and their body. A barrier often caused by bias, racism, stress and a paternalistic clinician-patient power imbalance. 

Seeking ways to involve yourself as a patient in research design, data collection and advocacy was strongly encouraged. Get yourself a seat at the table and bring others with you, one speaker said. Tokenism will not work. 

The only way to understand what makes women feel safe or unsafe is to ask them. The only way to understand the barriers they have faced in accessing safe care is to ask them. These insights are vital in understanding outcomes.  

Personalised care 

We heard many times throughout the day from people advocating personalised care. Holistic care that responds to need, vulnerability and the whole person. Care that enables deeper understanding and improved outcomes. Care that takes time and resource to get right.  

One midwife attendee questioned whether the medical model was meeting the needs in maternity services. She talked openly about how the current system stunts her ability to provide much needed personalised care.  

Dr Christine Ekechi talked about the rate of stillbirths and how it has increased for the first time in 8 years. She reflected that there is a growing anxiety in patients and staff about the care that can be provided. This, she said, is contributing to a fragmented relationship between the two.  

Embracing digital solutions  

Opportunities to use digital health solutions to improve outcomes and patient experience were also talked about.  

Professor Basky Thilaganathan spoke about a trial in 26 UK hospitals of a medical 'device' called Tommy’s Pathway which uses a dual-facing approach to engage both clinician and patient. The aim of this Clinical Decision Support Tool is to ensure that whatever your ethnicity, your outcome would be the same.  

We were asked by his fellow panellist to reflect on that for a few moments.  

To really let it sink in.  

Whatever your ethnicity. Your outcome would be the same.  

It could be a huge leap forward for maternity safety and health equity.  

But barriers to embedding tools like this, despite evidence of their success elsewhere, were noted. Largely being attributed to bureaucracy. The need for digital advances to be translated into healthcare provision faster was discussed. However, questions were raised around the feasibility of this when our day-to-day healthcare IT systems seem so woefully inefficient, outdated and a constant drain on staff time.  

If health tech solutions were found that could improve patient safety, questions also have to be asked about how accessible they are. If they are available to patients to buy privately, you are potentially widening disparities. We need to find a way to make digital solutions cheap and accessible to everyone... whilst protecting patient data. 

Improving data and knowledge 

After an in-depth discussion around menopause and menstruation, panellist Dr Nighat Arif summed it up beautifully, "We just don't know enough".  

This lack of knowledge around women's health is a reflection of a system that was built on the white, male body and it plays out in many ways. Gynaecology waiting lists are long, with 1/3 women waiting up to three years before getting a diagnosis. Women undergoing IUD and hysteroscopy procedures are too often enduring severe pain and left with long term trauma and there is little understanding as to why pain experiences differ so much. When asked what an abnormal period is, Dr Arif said, " We don't actually know what a normal period is".  

Staff need data, both qualitative and quantitative, to update and improve their practice. This requires funding. It means commissioning research that is co-designed with women. It means employing a critical eye over how statistics are presented to ensure the messaging is accurate and health inequalities are uncovered. Dr Mariya Kalgo talked about the dangers of 'correcting for race' when presenting data. How this can skew the findings to show that something is not a safety issue when in fact it is.  

Representation  

The importance of representation in healthcare and the role it can play in outcomes was a topic that came up throughout the day. Panellists Dr Arif and Dr Aziza Sesay talked about their public facing work and the positive responses they have had to seeing a woman in a hijab talking about menopause, or a woman sharing information on 'how to check your vulva' that includes images of a Black vulva. One woman had written to Dr Sesay having seen this, to thank her for the video as it had led to her getting diagnosed and treated for cancer.  Representation can lead to better outcomes. 

We also heard about the value in being able to culturally relate to a patient as a clinician, to understand concerns, responses and needs within different contexts. To be able to deliver care in a culturally sensitive way that ensures the patient feels comfortable accessing the system to seek help and advice without judgement or bias.  

Final thoughts 

To understand the factors that contribute to good and bad outcomes we need to start by listening better to women. This is true of the GP's consultation room, research design and digital developments.  

Patients need to feel informed and empowered to question things.  

Staff need quality data, based on lived experience to evidence their practice. They also need the tools and resources to enable them to understand individualised risk and the time to provide personalised care.  

Women's health has been the poor relation for too long. The stark statistics showing poorer outcomes for Black women and their babies in maternity care highlight an urgent need to co-design research and policy with those most likely to experience baby loss and complications.  

Conversations shouldn't just include these voices, they should be led by them.  

About the Author

Stephanie O'Donohue is a communication and engagement specialist, writer and editor.

She has worked for health focused organisations for over 15 years and is now Content and Engagement Manager for Patient Safety Learning (the hub). Among other topics, Stephanie is passionate about women's health and working with others to shine a light on the patient safety issues underpinning many of the inequalities that persist.