Advancing Research on Chronic Conditions in Women (2024)

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Appendix C Patient Perspectives and the Lived Experience SUMMARY OF THE PANEL DISCUSSIONS ON THE PATIENT LIVED EXPERIENCE While conducting the consensus study on a Framework for the Consideration of Chronic Debilitating Conditions in Women, three open meetings were held, two of which included sessions on the patient lived experience (May 31 and August 9, 2023). Given the breadth of chronic conditions covered in this study, it was not feasible to include patient perspectives representative of all conditions. The selection of those for the patient lived experience panels was therefore based on committee members’ requests to learn more about specific conditions: cardiovascular disease, migraine, endometriosis, and four autoimmune conditions – systemic lupus erythematosus, psoriasis, multiple sclerosis, and Sjogren’s syndrome. Panelists representing either themselves or advocacy organizations for these chronic conditions were invited to share their experiences, struggles as they navigated the health care system, and reflections on how to improve facets of scientific research and clinical care – from diagnosis, treatment, and management. The committee and National Academies staff are grateful to Ann DeVelasco, Congresswoman Donna F. Edwards, Annika Ehrlich (Alliance for Headache Disorders Advocacy), Diana Falzone (Endometriosis Foundation), Evelyn Kelly, Ayesha Patrick (Autoimmune Association), and Wendy Rodgers (Lupus Foundation of America), for their participation and their invaluable contributions to the study. Several themes common to the varied experiences of the panelists emerged during the panel sessions. When discussing the most significant barriers they faced as patients/patient advocates, the most frequent responses were as follows: 1. a lack of knowledge and understanding related to diagnosis of the condition 2. biases, stigma, and cultural insensitivity rooted in this lack of understanding 3. affordability of health care, including medications and procedures 4. challenges in the day-to-day management of the symptoms and risk factors associated with conditions PREPUBLICATION COPY: UNCORRECTED PROOFS 

2 ADVANCING RESEARCH ON CHRONIC CONDITIONS IN WOMEN The panelists suggested several ideas on how the health care system can improve to better serve patients. Next is a summary of their opinions, with selected quotations to provide context and better illustrate their positions: • incorporate screening into primary care visits to obtain early diagnosis and initiate treatment • improve access and affordability of medical care “…I did some advocacy work in Washington, DC in reference to step therapy where you have to first try medications and then fail at them before you are given access to the medications that can actually help you…The amount of time that is taken that could have potentially benefitted a patient if they ha[d] gotten the right treatment, the access to the right treatment in the beginning, you lose that valuable time. Access is something that is hugely important.” “If you do not have insurance, where do you go? Who do you go seek medical care for a disease that many times is invisible and not understood?” • reduce diagnostic and treatment delays, as conditions could worsen over time and cause permanent damage and disability • understand the impact of chronic conditions on mental health and how effects on mental health could in turn negatively affect the disease course • prioritize the lived experience of patients, respect the patient voice, and work collaboratively with patients to find the best clinical outcomes “…a lot of the times in the clinical setting people do not ask you about any of your personal experience. You do not know that I am a mother and a grandmother, or you do not know that I am trying to go back to school. I will give a specific example. I decided to go back to school and do my second master’s. I started the first class, and I could not retain anything. I happened to go into the neurologist for a follow-up appointment and I told him, what happened. He said... ‘I did not know that you were going back to school. The medication that you are taking causes that issue.’ He switched the medication. As soon as the medication was switched, I did beautifully.” “…how important it is to listen to patients and to our experiences, because no two experiences are the same, but there are a lot of similarities when you live with a chronic illness.” • educate health care givers on fundamentals of disease, typical or atypical symptoms (for example, it may not be evident that a patient is suffering from a condition), comorbidities, and current therapies, and if knowledge is lacking, speedy referrals to specialists need to be initiated “I was sent to numerous specialists and my bloodwork always came back normal. And then I was told that it could be something psychosomatic…” • increase collaboration among specialists or adopt a teams approach with a core group of specialists from the start of care PREPUBLICATION COPY: UNCORRECTED PROOFS 

APPENDIX C 3 “If there are ways that different physicians can work together to create better systems to treat patients and of course uniquely, because everyone is different, I think that obviously would create a better outcome.” “My saving grace has been connect[ing] with the autoimmune protocol community and changing my diet and working with functional medicine doctors, and naturopaths to assist me along my journey.” • provide resources to patients on treatment and management protocols and the latest developments in research that may be applicable to the clinical setting, and inform them of the higher risks for comorbidities associated with chronic conditions (for example, heart disease as a comorbidity for psoriasis) “I truly believe we don’t have to be on this journey alone and really can have the information and resources we need to make informed decisions about our health.” • include family members in discussions of treatment plans and management of symptoms and risk factors (for example, after acute cardiac events) • promote and encourage participation in women’s health support groups • propose and monitor other ways of managing symptoms and risk factors, including diet, exercise, and stress, and the use of alternative therapies covered by health insurance (for example, acupuncture, massage) • bring awareness to health care professionals and researchers of implicit biases, some of which originate from stereotypes about women in general or women of color specifically, which could detrimentally affect the quality of medical care (skepticism, minimization and/or dismissal of symptoms) and quality of research (not focusing on issues that matter to patients) “…These stories…We all have one collected theme going on. Not being listened to enough, not being understood...” “…really making sure that you have doctors who believe you, who listen to you. It is very important. It could be the difference between life and death because how one person is impacted might not be the same for another person. My story is not necessarily my friend’s story…But we all need customized care and that can be quite difficult navigating a health system.” “…all of these things I think really resonate for all of us where you have a condition that is minimized or maybe not taken seriously.” “…we need an increased awareness, and empathy, or acknowledgment that just because some symptoms cannot be explained by the traditional health care system, it doesn't mean that you shouldn't be taken seriously.” PREPUBLICATION COPY: UNCORRECTED PROOFS 

4 ADVANCING RESEARCH ON CHRONIC CONDITIONS IN WOMEN “…there has to be more attention paid to awareness…in the medical community, and hospital emergency rooms… women talk so often of just being dismissed or diagnosed with GERD or something and not taken seriously that they may be having a heart attack” One of the panelists who runs a cardiac rehabilitation program shared several comments about how gender and cultural norms influence the ways in which women seek care: “…a lot of times the women are the last ones to call for help when they're having chest pain. And whenever I get a new patient that comes to our group, a new Heart Sister who says, well, I didn't really think it was important, I wasn't going to call 911.” “…a lot of times the woman only wants to present a position that she's doing well rather than admitting to the things that are actually causing her a lot of difficulty. So, then the provider doesn't really have the right picture to provide the right care.” “Another thing that I see is that traditionally among our populations and even more among our Hispanic Heart Sisters, the women are not cultured to basically share their weaknesses, but they're looked at more as the strength of the family. And they don't like to change their role…” The panelists also gave suggestions on aspects of research that could translate to better clinical outcomes relevant to specific chronic conditions: 1. As chronic conditions, such as migraine, affect women throughout life, it is important to include populations across the life-span, representing different hormonal stages, in research studies. 2. More research in the basic and clinical sciences should be conducted to provide understanding of disease mechanisms that could potentially result in screening and noninvasive diagnostic tools for endometriosis. 3. For lupus, more research is needed to develop medications that are effective and significantly ease pain with minimal side effects. 4. Considering that minoritized women have more aggressive lupus and die at younger ages, clinical trials should include more diverse populations. 5. Considering how migraine is the second most debilitating condition in Americans < 50 years yet one of the least funded research areas, granting agencies should disburse research funds commensurate to the burden of disease. 6. More research is needed on how healthy lifestyle changes (diet, exercise, stress management techniques), the gut microbiome, and inflammation, impact chronic conditions. 7. More research should focus on how women are impacted by chronic conditions at different stages of the life-span. 8. More research is needed to address how inequities, including racism and gender bias, impact the health of women of color. “…in addition to the need to pursue better therapies, to make sure that we're focused on research for chronic conditions that take all of us into consideration.” PREPUBLICATION COPY: UNCORRECTED PROOFS 

APPENDIX C 5 PATIENT ENGAGEMENT IN RESEARCH Implementing plans that encourage patient engagement and patient-led approaches in research can improve both the patient experience and actual health of these patients through open, active, reciprocated dialogue and education. This could lead to research efforts that are more focused on patients, as they will address questions that are most relevant and applicable to them. Conversely, involving patients allows them to contribute to the direction and prioritization of research. Patient partners in research could yield manifold benefits for both the research community and the patients themselves—patients can make better decisions, are more aware of health risks associated with treatments, and provide new perspectives that could spur research in new directions. An example involving patients as active partners in the research process is through collaborations with patient representatives and advocacy groups to create questionnaires that measure symptoms of particular chronic conditions. Other examples are engaging public attendees at conferences and receiving their feedback on health issues through surveys and other opportunities for public comment. Such findings may perhaps have better relevance and impact and inform the best ways to manage care and improve health outcomes. PREPUBLICATION COPY: UNCORRECTED PROOFS