On Gender Bias in Diabetes Technology - HIMSS Europe Series with Dawn Adams

The devices that are used for monitoring blood glucose levels weren't developed with women in mind, and the data sets collected from women in pilot trials were actually omitted because it reduced the overall sensitivity of the ratings and it changed the confidence intervals and the P value of the technology. My name is Dawn Adams and I also do a lot of advocacy work in the diabetes world.

Hello, dear listeners, welcome to a new episode of our HIMSS Europe special series on Narratives of Purpose.This week I bring you interviews with two speakers of the HIMSS Women's Health in Focus track from the session titled Beyond Redefining Chronic Condition Management.These interviews were recorded in Paris back in June at the HIMSS, the Healthcare Information and Management Systems Society European annual flagship event, also considered as Europe's number one digital health conference. For those of you listening to Narratives of Purpose for the first time, my name is Claire Murigande. I am your host on this podcast which is all about amplifying social impact by showcasing unique stories of global change makers who are contributing to make a difference in society. My guest today is Dawn Adams. Dawn is a midwife with a keen interest in diabetes, pregnancy, menopause and wearable technology.She has published research investigating the use of wearable technologies during pregnancy, menopause and perimenopause.Dawn is currently working with diabetes advocacy groups, researchers and charities to identify and address the specific needs of those living with diabetes across different life stages.Remember to rate and review our show wherever you listen to your podcasts or simply share your thoughts and feedback on the Narratives of Purpose website using this short link bit ly Narratives of Purpose and then select the review page. For now, get comfortable and let's dive into the conversation with Dawn.

My name is Dawn Adams, I live in Northern Ireland. I born in Northern Ireland and I've always been there.Basically I initially trained as a primary school teacher before retraining after my fourth son was born. As a midwife I practice in a large teaching hospital.I took a slight career break along the way from that to do a PhD in computer sciences, which I didn't complete for very personal reasons and I also do a lot of advocacy work in the diabetes world because I've been living with type 1 diabetes now for 32 plus years.

And what brings you at HIMSS?

I was invited to come to HIMSS by a friend from the diabetes community, putting me in contact with the organisers for the Women's Health Stream.So because I've been doing a lot of advocacy work around pregnancy, menstruation, menopause, perimenopause in particular, a friend had suggested that I might be a good fit for the conference.So this is my first time, I think ever at a non diabetes related health conference and it's been really interesting so far just hearing what's going on in the world of AI and machine learning.

So you'll be speaking at this women's health in Focus track in one session.How have you prepared, and particularly I want you to share with us, what is the main message that you want for the audience to take away from what you're going to share?

Because the session is looking at bias within healthcare and looking at alternatives to the male body in terms of what healthcare should be doing, could be doing and what the gaps are in existing healthcare patterns.That for me is such a challenging area because so much of what we as women are using to manage different conditions, to live well with other conditions, has been based on male physiology and half life of medications within male populations. My background as a midwife in particular has been a big driver for this.So what I would like people to take away is an awareness that medications in women work in a different way from they do in men, and that a lot of the digital technologies that have been developed in particular in the diabetes world have been developed within male populations.As one med tech company stated at a conference, the devices that are used for monitoring blood glucose levels weren't developed with women in mind and that the data sets collected from women in pilot trials were actually omitted because it reduced the overall sensitivity of the readings and it changed the confidence intervals and the P value of the technology. That's quite a massive thing.When you look at how many women, girls, older women, are using these same technologies, I find that really shocking and I still haven't quite got my head around it. I just feel it's interesting to put it out there.Whenever we see women signing up for things like the Zoe Forum and using glucose sensors to monitor their health, it only measures blood glucose levels. And in women it isn't as accurate as it is in men because it doesn't allow for other hormones, hormonal fluctuations and variability.

So do you mean that these products that are out there have reference levels for men, but then they're used by women? And this is what also physicians recommend to women? I mean, how is that possible?I mean, how do women go through that in terms of managing the disease?

I think personally that it means women have to work much harder to achieve the targets, the levels.And there's a lot more mental stress, mental pressure that goes on in the background there was a very interesting study which a friend in the diabetes community had run as part of the open project. If you're interested, you can Google Open Project Diabetes.And what they had shown was that women who were using diabetes technologies, even though they're using the same insulin, the same insulin pumps, the same glucose sensors, were sitting with a higher time in higher glucose levels than the men. So traditionally, blood glucose has been measured as HbA1c, which is a measure of red blood cells and the amount of glucose attached to them.Over a three month period for women, their HBA1C was sitting at around 6.5%. For men it was sitting at around 6%. And in addition to that, the men in that cohort tended to be Caucasian men or white men.So any people of colour, anyone who doesn't sit within that traditional research cohort, isn't captured accurately by a lot of the data that's published or shared at conferences, at events and with clinicians.So for people who aren't white males achieving the targets, there's a lot more work goes on in the background to try and have euglycemia or normal glycemia within a diabetes population, which is more missed in a number of research papers that are published.

But that's. I mean, that's incredible.

It's shocking.

It is shocking, right?

Shocking.

Because that's the majority of the population, if you think of it.

It is very much so. And for me, I question the validity of a number of the tools that are being used because you have such a small representation.It's actually not representative.

Absolutely. It's not representative at all.

Defined bias.It's now interesting to see countries such as China and Korea developing their own glucose sensors and countries like India are now developing insulins.And I really hope, the optimist of me hopes that what they're producing will be more inclusive, will be more representative of a global population and not a white European or white North American population.

How do you see things evolving? Right now you're at a congress where it's all about health, tech and digitization.How do you see, I would say patient advocates, or rather the collective, so the movement from down rather than from the top, influencing this through digitization.

I thought it was really interesting. One of the sessions was on AI this morning that I'd attended and the presenter was speaking that it should be a leadership led thing.And my heart sank because if you have leaders in tech fields, if you have leaders in medication, if you have leaders in clinical fields, lead in, you're looking at what the issues they've identified are, not what the issues are of the people that they are developing medications or treatments or therapies for. And I really feel so strongly that if you don't have.Have people who are not in that environment on a daily basis, you're missing the things that actually matter to those people.So I think if we're going to have more of an emphasis on technology, if we're going to have more of an emphasis on AI, machine learning, artificial neural networks within health, we need to know what it is that people who live with conditions, people who are aging populations, people who are younger, people who are midlife, people who are going through stressful times in their lives, that all of those experiences are brought to the table because every one of those stages in life brings its own unique challenges, brings its own unique perspective.And the culture of the person, or the ethnic background or lack of, of the person who is wanting questions answered will change and shape the way that the research should be going. But it feels like it's still very much driven by a very specific, very biased cohort.

Yeah.So last year on the podcast, I was speaking to many female founders within the, I would say femtech, but broadly speaking, women who are trying to solve this issue of the gender gap in healthcare. And one of them was the president of the PCOS organization.I forgot the name and she said something quite interesting and I want to know your perspective from diabetes area.She said that their organization is also a global one, but they're quite influential in terms of doing research, that the patient voice is also included, especially clinical research.As you were saying, if you don't know who you're serving, if you don't know their needs, you might, I mean, you will definitely miss the opportunity there due to impactful and useful products or therapies. So is it the case that also in diabetes, that patient organizations, for example, also have a voice in that?

Absolutely. I very recently completed work with Diabetes UK, obviously in the UK, looking at the area of perimenopause and menopause.I've just had another paper published with Diabetes Centre in Berne and they are a much more global population population. Diabetes UK have a wide number of people from different colours of skin, different ages, different populations.Diabetes Centre Berne have that net cast wider again where they're working with people who live in, were born in and who have only lived in a specific region of the world. So for me that has been a massive benefit.There is another diabetes specific group called Inuria who work at including lived experience voices from the ground up.So that whenever companies are developing medication trials, Enodia try to get in there before the company have actually formulated the question they would like to have answered.And they're trying to include more of the voices of people and using experiences, using the unique experiences to develop the ethics background, the research question, to identify how this could potentially be beneficial. And again, it's another group of people with diabetes who are coming from different regions across the world.So it sits outside the traditional research space, which for me is such a powerful tool. And there are other groups. I came into advocacy.I had been doing advocacy independently, but I came more into the advocacy through a German diabetes online community and they had been sending people with diabetes to diabetes conferences.They were able to get access, which quite often the door is closed whenever people with a condition try to get through the door of the conference because of licensing laws. I know that's very strong here in France, it's equally strong in the UK.But the work of DEDOC meant that people like me were able to talk directly to people who manufacture medications, people who manufacture insulin pumps, glucose sensors, and challenge those questions from the floor. And it's so lovely now, whenever you look at different conference replays and you hear how many people say, hi, my name is, I am from, and I am a DEDOC voice. And I just think that's so wonderful because they have taken that mantra from the HIV community of nothing about us, without us, and it has literally been burnt into everything that we do. For anybody who's listening has never had those conversations with a clinician. Don't be afraid to challenge. And if they don't know why, it's because there isn't research out there. So.

Exactly.

Keep asking, keep. And the more you ask, I think the bigger the landslide effect from that will be.

Yeah, I was actually going to ask you what would be the advice for anybody listening? Because, you know, you said that you're in the advocacy, you also live with diabetes. Like, what was your journey throughout the healthcare system?So if you have any tips and advice for anybody listening, whether it's diabetes or any other chronic condition, by the way.

I think for me, the biggest thing was having support, family support, friends, support and support of healthcare professionals. Initially, that, as I say, was more than three decades ago. So I know healthcare systems globally have changed in that time.Finding other people who live with conditions is a really good place to start because they're further along that road and they will be able to help you identify pitfalls before you find yourself in the middle of those points in your life.I also think being as educated as you can about your condition, if reading isn't your thing, audiobooks, vodcasts, there are lots and lots of interviews on channels like YouTube which will be able to address some of the questions that you probably have and you've been too afraid to ask of a consultant, of a clinician when you're in with them. The thing I keep saying to people within the diabetes world is there are no stupid questions when it comes to health care.If you're thinking this question, you think it's important. Other people will think it's important, too.Nobody has one unique question, but everybody's afraid to ask that question because they don't want to be seen as difficult. But if we don't challenge, we don't change.

Yeah, I like it. If we don't change, we don't change. So I'm looking forward to you challenging on stage tomorrow through the panel.And thank you so much for joining us.

Thank you very much for having me.

You're welcome.If you wish to follow Dawn Adams activities, be sure to connect with her on LinkedIn. The link is available in the episode Show Notes. Thank you so much for tuning in today. I appreciate you taking the time.Join me again next week for two new episodes of our HIMSS Europe Special series featuring speakers of the Women's Health track session titled "10 Years Too Long: Prioritizing Endometriosis". Until then, take care of yourselves, stay well and stay inspired.