Women's health: AI and addressing disparities, part 1

Perspectives on Health and Tech

In the last decade, a growing amount of research has increasingly exposed how a lack of funding for medical and pharmaceutical research around women’s bodies has put both patients and clinicians at a disadvantage for treating even common illnesses. With a lack of knowledge and awareness on women’s health, clinicians don’t have the data with which they need to practice, and patients don’t feel heard, some even experiencing bias at the bedside. How can AI and other technologies help address some of these challenges?

Featuring:

• Moderator: Nasim Afsar M.D., MBA, chief health officer, Oracle Health
• Christy Dueck, Ph.D., global head of the Learning Health Network and Health System Activation, Oracle Health
• Esther Gathogo, M.Pharm., Ph.D., senior performance improvement leader, Oracle Health
• Sarah Matt, M.D., MBA, vice president, physician and healthcare technology executive, Oracle Health

Listen as they discuss:

The moment they realized, personally or professionally, there was a gap in women’s health care (2:47)

• In practice for oncology patient
• Collegiate athlete performance
• Menstrual health care in school settings
• In practice, while pregnant

What is being done to address the lack of research on women and diversity amongst women (10:56)

• Representation in clinical trials
• Product development
• Expanding inclusivity in EHR data

What can be done to help address the lack of women and women of color in clinical studies (15:11)

The role of AI in care delivery (17:15)

• Tips for training AI algorithms
• Burnout, patient engagement, automation

Notable quotes:

“When we think about women's health in general, using more automation, using more AI/ML, could it help women in their ability to get care for themselves? It absolutely could … Because right now I think what we're finding is that the system’s stressed, all the people are stressed, the patients are stressed. Everyone needs a break and we can't do more with less. We're going to have to do things differently.” – Dr. Sarah Matt

“At the end of the day, we want to make, just like you said, those 15 minutes with the community members that you serve more impactful and with the option to bring more innovative things to your community than ever before.” – Christy Dueck, Ph.D.

“And we know that if there's such a low representation of women in clinical trials, it means that products are being approved without the representation of these women. And it means that the real-world evidence then becomes really important. If we are then using these products, we have to understand the female body and the diversity—in terms of the genetic background as well—and that diversity means that they might respond differently to the approved medicines. It’s also thinking about how to recruit and making it a lot simpler for women to understand the products.” – Esther Gathogo, M.Pharm, Ph.D.

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Episode Transcript:

00:00:00

Nasim Afsar You're listening to Perspectives on Health and Tech, a podcast by Oracle with conversations about connecting people, data and technology to help improve health for everyone.

Today on the podcast, we're discussing women and health equity. From personal and professional experience, how we've become familiar with the lack of resources and research on women's health and how AI and other technologies can help address some of these challenges.

00:00:35

Hi, I'm Dr. Nasim Afsar, chief health officer at Oracle Health. And joining me today on the podcast are three of my colleagues from around the world. I'll ask them to introduce themselves and give a brief overview of what they do.

Sarah Matt

Thanks, Nasim. I'm Dr. Sarah Matt. I'm a surgeon by training my fellowships and burns, but I've been in product development all over the world for my entire career. That's building our electronic medical records, new mobile applications, patient engagement solutions, you name it. First, I came in to drive our OCI, the cloud side of our business for health care and life sciences. And now, after our acquisition of Cerner, I focus on new product development.

Nasim Afsar Thank you. Esther?

Esther Gathogo Hi, I'm Dr. Esther Gathogo, and I'm a pharmacist with 18 years’ experience working across different sectors: community, hospital, academia and clinical research. And I currently work as a senior performance improvement leader in international based in UK. And I also focus on health equity and AI.

00:1:37

Nasim Thank you, Esther. Christy?

Christy Dueck Hi, everyone, I’m Dr. Christy Dueck. I'm the vice president and global head of our Learning Health Network and really have responsibilities around creating health system partnerships with life sciences industries to bring clinical research as an integrated component of clinical care.

Nasim Thank you, Christy. And my background is in internal medicine. I practiced as a hospitalist for over a decade in tertiary quaternary academic medical centers.

I've been in health care administration on the health care delivery side for over sixteen years in roles, in quality roles, in health management, contracting and health care operations. My team is focused on how do we ensure that across the globe we have healthy people, healthy workforce and healthy businesses. Driving the best of products and services to ensure that we're improving the health of the world.

So thrilled to be here and thank you all for joining me today as we talk about women and health equity.

00:02:47

To start us off, I want to talk about the moment that you all realize that there is a wide gap in women's care and that could be either personally and professionally.

Nasim So, to kick us off all kind of share a story from my background. This really kind of hit me a number of years ago when I had the privilege of taking care of a 48-year-old woman with end-stage metastatic colon cancer during her final hospitalization. I learned during this hospitalization that leading up to her terminal diagnosis, for about a year, she had seen a number of providers with her symptoms.

Initially started off with fatigue. She then had some abdominal pains, some nausea, and this was continually attributed to stress, irritable bowel syndrome. And during those 12 months, she was really never provided the appropriate diagnostic interventions, like a colonoscopy, until it was too late.

I also learned during that time that she was a phenomenally dedicated teacher. She was a caring mother. She was a spouse, a child, a sister, an incredible friend to many. It was absolutely heartbreaking to see that her voice was not heard as she didn't receive standard of care that really could have been lifesaving. And I wish I could say that this was a rare case. But cases like this happen every single day in the U.S. and across the globe.

00:04:22

Christy, I'm wondering if you can share with us when this really became real for you.

Christy Sure. A little bit different story for me, and mine's actually personal. So, when I was studying pre-med, I was an intercollegiate athlete in rowing with aspirations of competing at the national and elite level. And like so many female athletes’ experience, I really got caught up in the cycle of being asked to lose a significant amount of weight by my coaches, because rowing, like other sports, has weight classifications.

So over the course of a summer, I dutifully lost 35 pounds and returned back in the fall at under 130 pounds, which is a light weight. And in about three months I had a full osteoporotic hip fracture at the age of 20. And it was really a peak milestone for me. I was in my junior year. I was pre-med at the time.

00:05:22

I was never given, obviously, any guidance around the impact that that weight loss would have on my health, my endocrine system. And so that was really a milestone of it ended my rowing career, unfortunately. But it was really a driver for my career. I went on and got my Ph.D. in reproductive endocrinology and did a whole lot of research around the female-athlete triad since I was sort of the poster child for it at that time.

00:05:50

Nasim What a challenging personal experience to go through. Christy, thank you so much for sharing that, Sarah.

00:05:58

Sarah So I think, you know, as I went through my medical training, you kind of see things, you hear things, if things don't seem quite right a lot of times. I think where it really hit me is when I started having my own children.

So, I have four kids, and my first, I was still doing surgery at the time. And when I think back to that time, there were so many assumptions made about what I, as a professional, might already know about women's health or might know about my own body, and that I didn't. And when I would ask caregivers, they would either be like, “Oh, well, you know, it's this or it's that.”

And I think that having come from the medical field and having a baseline of information already, I still didn't have the answers I needed. And I was relying on my grandma or my mother or my sister or friends to ask advice when I couldn't get what I needed out of the medical system. And as a medical professional, I needed information like, “Hey, if I'm going to go into a vascular procedure, do I need to wear lead?”

00:06:57

“Hey, is this chemical okay for me? What if I get exposed to that?” And yes, sometimes there was a paper that I could Google and sometimes I could ask my doctor, but sometimes there just wasn't. And there wasn't the right people for me to ask within the medical community or otherwise. So I can really see how people just struggle, because I had, theoretically, all the resources I could possibly want available to me, and I still couldn't get the answers that I wanted.

00:07:27

Nasim Thank you for sharing that, Sarah. It really brings out the part of the heart of the matter, which is even when you have resources and knowledge, it can be so incredibly challenging. And so many women across the globe don't have the resources and the knowledge. Esther?

00:07:46

Esther I'm just going to take us back to the early years of when you're probably a teenager and you had the reproductive health conversation. And I was in boarding school and we came back after having been given sanitary towels and shown tampons and everything else.

And I think at that point the main focus was on the menstrual cycle and what's normal. But no one really talked about how bad it can be, I think for most. And so I think what became very clear is when girls, you know, because that's the stage when the menstrual cycle is being regular, more regular, and you started to see serious, serious problems.

00:08:33

You know, we had one girl who had to be taken by ambulance and started on a drip for menstrual pain, you know, and it's something that hadn't obviously seen before. And then as we got older, the conversations where I've had friends who've had a hysterectomy before 40 for benign conditions. And when you listen as a group, particularly around the problems that people face with the menstrual cycle, you realize that there's not a lot of treatment options.

And this is after many years of many women coming in to the medical center and recognizing that 10, 15, 20 years down the line, we're still using hormonal treatments as the main treatment for most of the conditions.

And I think when you listen to how, you know, it's impacting the mental health, you know, the life and social life and just their well-being, then you end up realizing that over time, more needs to be done with this. You know, because I think the medical community has somehow become just complacent because they have benign conditions and they can see that it's, you know, in terms of self-management or whatever it is that women do.

00:10:06

But I think thinking about now, especially as we are working women and, you know, how stress affects your system, it's something that I think and just thinking about needing more options. And like even getting down to understanding the basic understanding of why the disease happens, you know, some of those questions are still, you know, they're not there. So that's why.

00:10:35

Nasim Thank you for that, Esther. I think you highlight the challenges of managing something that is as basic as it gets and it's biologic, and how much work and understanding still needs to happen for some of the most basic and biologic processes in women. So I really appreciate you sharing that.

00:10:56

So, we know that a lot goes into these gaps of care from lack of understanding or honestly acknowledgment of biases in vulnerable populations to lack of medical and pharmaceutical research considering women's health, I think you all touched on different sides of this. So let's focus on representation of women and women of color in research. What has been done to address this gap in research and data? Esther, I'm going to ask you to kick us off.

00:11:30

Esther Yeah, and I was reading a bit around this and just throwing out some figures that, you know, women are representative of 22% of clinical trial research.

And for women of color, it's been reported even as low as 2%. It makes you think about the information in terms of the clinical research, whether it's truly representative of the diversity of women, you know, across even the globe, if I want to say it that way. And we know that if there's such a low representation of the of women in clinical trials, it means that products are being approved without, you know, the representation of these women.

And it means that the real-world evidence then becomes really important. Which is where I think if we are then using these products, we have to understand that the female body and the diversity of all of us in terms of the genetic background as well—and that diversity means that they might respond differently to the approved medicines—is also thinking about like how to recruit and making it a lot simpler for women in terms of understanding the products.

00:12:51

Because one of the biggest things would be how does this product affect my body? Most of the time people are concerned about fertility, you know, and a lot has been done over the years to try and just put women's minds at ease. But it is difficult.

And this is where I find that the electronic health record and thinking about not just about that the information is within the record, but are you collecting information in the clinical care of women and representing it in that way and within if you're doing clinical observation studies, because if you've got a product and you're not, for example, collecting information on the impact on the menstrual cycle, but you're getting lots of reports from women saying they've had a few missed menstrual cycles and they don't understand why it could have been the product that they're taking. But if this information is not being captured, then it's not within the system, which means that you start you still can't glean the insights that you need from the electronic health care records.

00:14:03

So I feel that not only around and when you look at internationals looking at the numbers in terms of the proportion of women who are conducting clinical research as well, and that's quite low. So it can also then make you think about in the end, when are designing the clinical trials, is someone speaking up for the diversity of women to include them in the clinical trials or in the trial design?

Because then you are collecting the information that will be useful as well for women when it comes to evaluating whether or not they should take a product or they should be recruited into a trial.

00:14:51

Nasim So there's a real multi multifaceted problem, right? It needs to really be tackled from multiple, multiple angles as you highlighted. So, Christy, Esther highlighted how low representation of women and minorities as has carried out in clinical research. What are we going to do to fix that?

00:15:11

Christy Oh, that's a big question, but I think, you know, we got to we got to start with working with what we have in the most effective way. And so, you know, from my angle of the world, I'm not a practicing clinician, but I've been engaged in clinical research my whole career.

And coming from Cerner, we had this realization of, oh my gosh, we're literally sitting on 40 years of digitized health care data. How do we turn that as a giant lever to help address some of these broad stroke issues, like women and access to clinical research?

And so in my world, one of the things that we did was create a partnership with health systems and an opportunity for them to share their data with other health systems so that we could create a searchable dataset, a real world data set that we could then work in partnership with health systems to bring clinical studies that address issues in women's health to the point of everyday health care, and use that data as the accelerant to get very prescriptive in finding women that are a match for the specific study criteria or enabling care teams to engage directly with their patient populations that may be a fit for a new, innovative trial in a rural community that would never have had that opportunity before. So right now we're sitting at this critical point in health care where we know we've got a whole bunch of data.

00:16:51

That's our quality problem. We've got more data than we know how to use. And to Esther's point, it's now making that data a lever we can pull to accelerate clinical research, to focus on the specialty groups where we've seen disparities in care given up until this point in time.

00:17:11 Nasim Agreed. Agreed. So, you know, we've talked a couple of times around the role of technology in helping address disparities.

I want to focus in on the role of AI in health care delivery. What's the potential and what are the downsides?

00:17:30

Sarah So, you know, when we think about AI/ML it's been the buzzword for how many years now? And I think during COVID, everyone recognized that we have to do things differently now than we did in the past.

And so everyone’s heard about ChatGPT. It's been a huge buzz. Everyone wants to talk about AI/ML, but a lot of health care organizations, a lot of ministries of health, have been slow rolling in how they deal with AI/ML over the last couple of years. A lot of that has to do with trust and why would we be concerned about that for the same reasons that health care in general has had problems for decades and decades and decades.

00:18:04 So that means whether it's structured data coming from an electronic medical record, straight from a clinical trial database, wherever that data is coming from it, we have to make sure we're comparing apples to apples. And every single algorithm, every AI model that we build out, has to be trained.

So, when we think about women's health and how we can improve women's health, ultimately, there’s going to be models that are trained on data that doesn't include women. Well, how is that going to impact us?

If you think about all the different ways we treat people today, whether it's in nephrology and kidney health and the way African-Americans have been treated in the past, in terms of those algorithms, whether it's X, Y or Z, we have so many clinical rules that we use today that have their own inherent biases based on medical data from the past.

00:18:54

So if we're going to build out new algorithms, we have to make sure that we're training it properly. So things to think about for people developing these algos is: who is your set of patients that you're going to bring into this model? Are women included? Are people of color included? What other kinds of people should be included in this algorithm’s data set to make it a great model?

When we think about women's health in general, using more automation, using more AI/ML, could it help women in their ability to get care for themselves? It absolutely could. When we think about the nursing shortages all over the world, when we think about how hard it is to make a doctor's appointment on a Monday, when you have a bunch of kids, when you have a job, when you think about how much time a provider is actually going to take with you … how can we automate things for the patient?

00:19:48

How can we automate things for the provider? How can we provide that small town doctor feeling in 15 minutes? How can we provide that care and engagement with less? Because right now I think what we're finding is that the system’s stressed, all the people are stressed, the patients are stressed. Everyone needs a break and we can't do more with less. We're going to have to do things differently.

00:20:18

Christy I love that. I'm just going to jump in right now and do a high-five to you on that one, because I think, right, fundamentally—and, Nasim, you and I’ve talked about this before as well is—at the end of the day, we have to change our behavior around health and care, regardless of what side of it you're on, whether you're a provider of it or a receiver of it.

And that behavior change is what's going to drive our ability to be able to actually leverage and receive the benefits of all the cool stuff, Sarah, you just talked about. But if we don't change the behavior around health care as the starting point, it doesn't matter what great tools we develop if people don't use them. And so in my world, you know, we're trying to engage critical-access hospitals who have never, ever participated in a clinical research study before.

00:21:14

And the first thought and the first line of defense is, “I don't know how to do that. We've never done that. No.” And really, it's creating that opening of, “We're here to partner with you. We've got all of the tools and technology in place to enable you to do it.” And at the end of the day, we want to make, just like you said, those 15 minutes with the community members that you serve more impactful and with the option to bring more innovative things to your community than ever before.

And on the patient side, or being a community member, you know, I love all the powerful stories that I get to hear of people who are busy, women who are really busy, and now they look at participating in a clinical trial as even a control patient, as a way to give back, as a way to serve. And most of those stories end with an, “Oh my gosh, I thought I was a control patient, and I actually got diagnosed as a result of my participation in that study because I haven't done anything in my health care over the last three years with COVID” because of all the reasons we all just talked about.

00:22:22

Nasim I think you all highlighted how technology can really be used to facilitate receiving care, getting care, getting better care, facilitating your care at the time that we need. And there are barriers that we have to overcome. And I think that's kind of Christy, your point about that changing relationship.

Esther, you were touching on this. I think those are the elements that we have that we have to work through as a society to be able to move things forward.

00:22:56

Well, thank you all for joining us for this thought-provoking conversation about women and health equity. I want to thank our panelists Christy Dueck, Sarah Matt and Esther Gathogo.

Great conversation around the role of technology and how can we address some of these shortcomings and limitations that we have for women to receive better care. But lots of areas identified where we really need to work together in partnership to address this as we move forward. Looking forward to ongoing dialog around this, and more importantly, action around how we can impact better health for women across the globe. Thank you.

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