Exploring Self-Tracking as a Participatory Research Activity Among Women with Endometriosis
Summary: Endometriosis is a chronic disease estimated to affect approximately 10% of women in reproductive age. Women with endometriosis experience high rates of morbidity and a severely reduced quality of life. Currently, little is known about the disease including what causes endometriosis and why symptoms and treatment success rates are so variable. This lack of understanding about the disease presents an opportunity to engage patients as active participants in research to better describe the signs and symptoms of endometriosis–a necessary a first step in phenotyping the disease. In this qualitative study, we sought 1) to explore women’s attitudes and motivations about self-tracking their experience of the disease, and 2) to determine the feasibility of self-tracking endometriosis. A series of five focus groups were conducted in New York City with a total of 27 adult women with endometriosis. Thematic analysis was used to analyze the qualitative data. Four themes emerged when exploring self-tracking as a participatory research activity: 1) motivations for self-tracking, 2) attitudes toward self-tracking, 3) relevant variables and descriptions for self-tracking the experience and 4) modes of self-tracking. Women were motivated to track for better management of their symptoms, their lives, and improved patient-provider communication. But participants felt limited by the self-tracking apps they used, observing that the range and granularity of variables available did not adequately represent their experience. Women were also motivated to participate in endometriosis research, and saw value in self-tracking for altruistic reasons, suggesting that relatedness, one of the basic axes of self-determination theory, can be a powerful motivator for women with endometriosis to participate in research.
This study confirms that women with endometriosis are willing to self-track as a participatory research activity, that the variables women want to track will be helpful to researchers, and that these variables are missing from current knowledge about endometriosis but it is feasible to track them. The themes we observed also help elucidate different strategies to engage patients who may be suffering from other poorly understood chronic diseases that are associated with a wide range of patient signs and symptoms.
Keywords: Endometriosis, self-tracking, qualitative methods, participatory medicine, participatory research, phenotyping.
Citation: McKillop M, Voigt N, Schnall R, Elhadad N. Exploring self-tracking as a participatory research activity among women with endometriosis. J Participat Med. 2016 Dec 29; 8:e17.
Published: December 29, 2016.
Funding Source: Mollie McKillop, MPH, MA is supported by NIH BD2K Training Grant T15 LM007079-23S1; Noémie Elhadad, PhD is supported by NSF award #1344668.
Competing Interests: The authors have declared that no competing interests exist.
Endometriosis, a chronic and incurable condition in which the endometrial lining grows outside of the uterus, affects approximately 10% of women of reproductive age.  To put this prevalence rate into perspective, diabetes is estimated to affect approximately 6% of the female population in the United States.  Women with endometriosis experience high rates of morbidity and a greatly reduced quality of life. For example, women with endometriosis experience 0.809 quality-adjusted life years per woman.  In addition, they have significantly reduced productivity and higher healthcare costs. On average, the total cost per woman is €9597 per year, and women lose 10.8 hours of work weekly.  Symptoms vary greatly and may include, but are not limited to, severe menstrual pain, pain with sexual intercourse, chronic pain, constipation, and bloating. A woman who has mild pelvic involvement can have severe symptoms while a woman with widespread disease may not have any symptoms at all.  It is not clear why symptoms do not correlate with histological disease phenotype and disease progression. Little is known about the causes of endometriosis. The disease is “estrogen dependent” and seems to be somehow related to chronic inflammation.  There may also be a genetic etiology. 
Because symptoms manifest so differently in different women, diagnosis is challenging. The diagnostic gold standard for endometriosis is visual inspection through laparoscopic surgery. Due to the invasiveness of diagnostic procedures, and the low level of awareness of the disease among providers and the general public, diagnosis is delayed on average 10.7 years from the onset of symptoms.  Once women are diagnosed, they have limited treatment options. Most treatments aim to manage symptoms through estrogen reduction or physical removal of lesions through surgery. Because potential endometriosis clinical subtypes are not well understood, it is not clear which treatments are best for a particular patient.
To develop new treatments and diagnostics and provide better care for patients, it is necessary to more clearly describe the signs and symptoms of endometriosis. This may allow better characterization of the disease, producing a phenotype and possible clinical subtypes. A necessary first step in phenotyping is to elucidate the catalogue of signs and symptoms of the disease and their manifestations across the menstrual cycle. Patients represent a rich source for this type of information as they can provide a first-hand account of the disease. Historically, however, the symptoms experienced by women with endometriosis have been stigmatized, dismissed, or normalized, and endometriosis patients have sometimes been ignored by the medical and research communities.  Women with endometriosis also report high levels of social isolation.  Endometriosis patients therefore are a group likely to be motivated to engage in participatory research activities that can help the medical and research communities better relate to the patient experience of the disease. Endometriosis patients are a group likely to be “citizen scientists” studying their own disease. Citizen science is an emerging field of research, where lay individuals contribute data they collected and even participate in the research through brainstorming and analysis. While citizen science started as a movement in the natural sciences, it is gaining momentum in medicine. 
Recent trends in health care and technology support active patient participation in research. In particular, mHealth, in which mobile and wearable digital devices can measure and monitor one’s health, offers new ways of practicing public health and medicine as well as performing research, particularly among chronic diseases.  In particular, self-tracking of one’s health and disease patterns to produce patient-generated data, an activity fundamental to the quantified-self movement, provides an exciting new way to engage patients in disease self-management and self-discovery. Self-tracking with mHealth tools provides an appealing opportunity for patients to better manage chronic conditions, the impact such diseases may have on quality of life, and to improve patient-provider communication. Self-tracking through mobile applications is a useful mechanism for both elucidating endometriosis signs and symptoms over time and engaging patients, not just as research “subjects,” but as research “participants,” who are able to generate their own hypotheses about the disease.
In this study, we aim to qualitatively explore, through focus groups, self-tracking as a participatory research activity among women with endometriosis. Because endometriosis is an enigmatic disease, it is important to better understand the experience of these patients. The authors believe that self-tracking is a suitable first-step towards active patient participation in citizen science.  In this study, we sought to explore the attitudes and motivations toward self-tracking the experience of endometriosis, and to explore the feasibility of phenotyping the disease through self-tracking.
A series of five focus groups were conducted with a total of 27 adult women from the New York metropolitan area over a period of three weeks in February 2016.
To determine the content of the semi-structured focus group guide, interviews were conducted with three women with endometriosis (these women did not participate in the subsequent focus groups). During each of the 1-hour interviews, researchers asked and learned about the personal history of the disease for each woman, their symptoms, and the disease’s burden on their everyday lives, relationships, and careers.
Women were recruited via convenience sampling through the Endometriosis Foundation of America email listserv with 5,000 subscribers and by posting flyers at Columbia University in the City of New York. Eligibility included endometriosis diagnosis through laparoscopic surgery. Potential biases in recruitment may include selecting for a highly engaged and health literate population, given most women were recruited from a patient advocacy email listserv. Of the 34 women who initially agreed to participate in the study, 27 attended the focus groups. All of the women who came agreed to participate.
All study procedures and informed consent documents were reviewed and approved by the Columbia University Institutional Review Board for the Protection of Human Subjects prior to study initiation. All participants were given written informed consent prior to participation.
Focus groups took place at the Endometriosis Foundation of America’s offices in midtown Manhattan. Each focus group lasted approximately 90 minutes. Only the participants and two researchers (co-authors NE and MM) were present at the focus groups.
Focus group data was collected until the researchers felt saturation had been reached. Each focus group was audio recorded and transcribed verbatim. Verbal member-checking was used during and after each of the interviews and focus groups.
Thematic analysis was used to analyze the collected qualitative data using Nvivo version 11. Two coders independently familiarized themselves with the data. Initial codes were then identified and codes were further refined, named, and defined in a codebook. The focus group data was then re-coded using the codebook codes and corresponding definitions. From the codes, major themes were identified. Inter-rater reliability was calculated for each code using Cohen’s Kappa based on every dialogue turn.  The Cohen’s Kappa scores for each theme where then averaged over all codes.
Given that women with endometriosis experience high levels of social isolation and are often dismissed by the medical community, it is important to understand how well their psychological need for relatedness is being met. Gaining insight into this need can help in understanding how and why women with endometriosis might be motivated to participate in self-tracking as part of citizen science. To measure relatedness and other basic psychological needs, we used a family of scales from Self-Determination Theory (SDT). Each participant completed a paper-based assessment of their basic psychological needs. We used the Basic Needs Satisfaction in Life scale, the Basic Needs Satisfaction at Work scale, and the Basic Needs Satisfaction in Relationships scale.  Each of the surveys contains items that pertain to the subscales of competence, autonomy, and relatedness. 
Women ranged in age from 27 to 60 with the average age being 37.5. Participants included women who were currently employed as well as those who were retired or self-employed. The disease onset varied, with the average age at diagnosis being 29.4 and ranging from 18 to 40. Most women experienced symptom onset when their periods began in their early teens. Therefore, women experienced, on average, approximately almost two decades between symptom onset and diagnosis. In addition, participants had lived with an official diagnosis for, on average, 8.6 years. This finding is consistent with previous literature, which has shown gaps of many years between disease onset and disease diagnosis. 
The results of each of the three psychological needs assessments, broken down by subscale, are presented in Table 1.
As can be seen from Table 1, within the Basic Needs Satisfaction in General Scale, participants felt their autonomy needs were least satisfied while their relatedness needs were most satisfied. Overall, women have their needs met least at work and experience greater needs satisfaction in their interpersonal relationships when comparing the work and relationship scales. Participants report a good level of autonomy in their relationships but a lower level of relatedness when comparing needs across the relationship scale. Women also report a lower level of relatedness at work as compared to the general and relationship scales. These results are difficult to compare to women in the general population and those with chronic disease. Some studies have measured general needs in the general population but women-only estimates and measurement using the work and relationship scales are lacking in the literature.  These results demonstrate an opportunity to better satisfy the basic psychological needs of women with endometriosis, particularly the need of relatedness. One way in which relatedness might be better satisfied is through participatory research activities, a hypothesis which was further explored qualitatively through focus groups.
Four themes emerged when exploring self-tracking as a participatory research activity among women with endometriosis: 1) motivations for self-tracking, 2) attitudes toward self-tracking, 3) relevant variables and descriptions for self-tracking the experience of endometriosis and for research and 4) modes of self-tracking. Table 2 describes the themes, how codes were organized to construct the themes, and the Cohen’s Kappa for each theme.
1. Motivations for Tracking.
Participation in Research Activities. Women wanted to self-track their experience of endometriosis to participate in research. Women were interested in participating in this activity as they could relate to other women with endometriosis, particularly adolescents who might be experiencing symptoms for the first time, based on the difficulties of their own personal experiences. Participants believed no woman should have to go through the experiences they had endured and were particularly motivated to self-track for this purpose. Participants also discussed how they were reluctant to self-track if they didn’t know how the data was going to be used. However, participants felt motivated to participate in self-tracking and were willing to share their data if they knew that qualified researchers were using that data to advance endometriosis research.
“I do think that I would be motivated to participate in the app for tracking and share my data, because I know it will help other people.”
Women were also motivated to self-track to explore their own hypotheses about the disease. In particular, participants expressed a disconnect between the clinical stage of their disease and the symptoms they experienced and wanted to better relate their experiences to current medical understanding of endometriosis.
“I only go to specialist now because the primary doctors don’t do anything for me and regular GYN don’t do anything for me. They don’t even understand.”
Communicate with Provider. Women explained how self-tracking was useful for documenting symptoms and symptom patterns. Self-tracking of symptoms was seen as a way to “educate” providers about what patients experienced. Participants felt doctors’ understanding of endometriosis did not fit their experience of the disease, and women believed self-tracking could help them better relate their symptoms to their provider. Participants thought self-tracking might help women feel more competent and empowered in their interactions with their doctor.
“Because when you’re talking to the doctor, you don’t always remember. And so I kind of — I remember actually like collecting the data for I have to show the doctor [my data for] how many days [I had pain]. And it’s like most of the month I had bleeding and pain. This is not normal.”
Manage Symptoms. More recently diagnosed endometriosis patients were more eager to use self-tracking to understand changes in their endometriosis symptoms over their menstrual cycle. Participants who were more aware of their patterns and described themselves as “mature” endometriosis patients were more interested in tracking their endometriosis symptoms to understand the progression of their symptoms over time. Beyond understanding their natural symptom patterns, women wanted to understand, through self-tracking, what triggered their symptoms and what treatments might help them. Many women felt they were alone in their symptom management, believing their symptoms were often dismissed or normalized by medical professionals. Participants therefore felt self-tracking could help them feel more competent in managing their condition and reduce the uncertainty they experienced around “what works” and “what doesn’t work.”
“Well, that’s what I mean I used to track and so sometimes I’d be sorry that I didn’t track it because maybe it worked better than I thought.”
Manage Life. Women were interested in self-tracking not just to manage their endometriosis symptoms, but also to manage their quality of life. The disease was considered especially disruptive to women’s work and social lives. For women with more predictable symptom patterns, self-tracking was a useful way to predict symptom flares. Knowing about symptom flares could help women plan their work and social schedules, avoiding important events on days they predicted would be “bad.”
“It’s a survival guide so, too, so that we can go out and enjoy ourselves every once in a while.”
2. Attitudes Towards Tracking
The attitudes of women toward self-tracking as a participatory research activity were very positive. Women were excited that through this type of self-tracking they could feel a greater sense of relatedness to other women with the disease, the research community, and their medical providers. Attitudes toward existing self-tracking apps that women had used or were currently using were negative and women felt that these apps did not capture their experience of endometriosis. For example, women discussed how they often had “weird” symptoms such as heightened smell and eye floaters and were interested in tracking symptoms they thought might be related to their disease. Women were also reluctant to use these apps, given that they did not know how the data was being used. Although women were overwhelmingly enthusiastic about self-tracking as a participatory research activity, they did have some reservations. In particular, participants felt self-tracking could be discouraging if it acted as a constant reminder of their sickness, poor quality of life, and that “nothing works.” Women therefore wanted to track their “little victories” or what they were able to accomplish given their disease and thought self-tracking apps should act as a “cheerleader” and provide positive encouragement. Women were also more motivated to self-track, despite these reservations, if they knew that their data was being used for research and to help other women.
“Once you’re kind of like a survivor of it, you feel like an obligation to give back. I mean in our own ways, we’re all survivors of this. I just keep thinking about the young girls who — it takes 10, 15 years to diagnose them while their coping with all these things, and like I’m really motivated to do something about that, for example.”
3. What Variables to Self-Track
Women tracked a wide range of variables, as it could be unclear which symptoms were relevant to their disease. Women also felt the variables they were interested in tracking could be highly specific to their individual experience of endometriosis. The symptoms women experienced were complex and highly varied, and therefore it was felt that self-tracking should capture the full scope and granularity of endometriosis symptoms. Although there was a wide range of variables women were interested in tracking, nine key categories of variables emerged.
Pain. Pain was the most commonly experienced symptom among the participants. However, the quality, intensity, location, and duration of pain varied greatly among women. Therefore, women were not just interested in tacking pain events but wanted to be able to describe the many different dimensions of the pain they experienced.
Menstruation. Women wanted to track their menstrual cycle and the duration of the different stages of their cycle. Women felt it was important to understand their cycles, since their symptoms most often occurred cyclically in connection with their period. Moreover, women experienced symptoms directly from menstruation, such as heavy bleeding. Women also thought it was important to track the consistency and color of their flow and to track changes in their menstrual cycle characteristics, since such changes might indicate important changes in their disease.
Diet, Exercise, and Weight. Lifestyle factors like diet and exercise, along with general health indicators like weight, were useful to track.
Gastrointestinal and Genitourinary Issues. Participants experienced a wide range of gastrointestinal and genitourinary symptoms that they were interested in tracking. In particular, women wanted to self-track their nausea and abdominal pain.
Fatigue, Sleep, Sickness. Severe fatigue was a common symptom among participants, and participants were particularly interested in tracking how it correlated with the menstrual cycle, since women felt these types of symptoms worsened right before their period. Similarly, fever and cold were common during the week before a woman’s period. Sleep was also discussed as an important variable to track, given that women often had interrupted sleep cycles due to their endometriosis.
Life Events. Endometriosis had a significant effect on activities of daily living such as work, socializing, and sex. Self-tracking was seen as a useful tool for forecasting symptom flares, allowing women to better plan their work, school, and social schedules. Some women shared their predicted “bad days” with their spouse, family, or even co-workers. Participants also expressed how endometriosis symptoms affected their sexual relationships and thought self-tracking could help predict when it might be a better or worse time to engage in sexual activities.
Mood, Emotions, Affects. Negative emotions and moods were often discussed. Women wanted to track depression, mental fogginess, social isolation, stress, trauma, anger, guilt, and irritability. In particular, women wanted to be able to represent the full range of emotions they experienced along with descriptors that allowed them to track their emotions in sufficient granularity.
Comorbidities. Participants described how they experienced other chronic diseases, mostly autoimmune disorders and allergies. Women were curious to track these co-morbidities in an effort to understand if they were related to their endometriosis.
Treatments. Women wanted to track the medications, herbs, supplements, and vitamins they took in order to help treat or manage their symptoms. Women took traditional hormonal medications like birth control pills in addition to alternative treatments like acupuncture.
4. Methods for self-tracking
Digital. All participants, in some way, engaged in self-tracking their endometriosis, although the ways in which tracking was performed differed. Women described how they often used digital tools like typed notes, Excel spreadsheets, Google Docs, Google Sheets, and digital calendars to track variables related to their disease. Women who wanted more accessible and portable forms of tracking used digital note and dictation apps, and women who were interested in primarily tracking their menstrual cycle often relied upon existing period and fertility trackers. Although women liked the convenience of these apps, they found it frustrating that such apps did not account for their experience of the disease. As a consequence, women often ended up tracking their symptoms in highly fragmented ways or did not use any digital tracking tools.
Non-digital. Women also engaged in self-tracking through non-digital means. For women who had more predictable symptoms and symptoms patterns, it was easiest to mentally self-track their disease or track using paper-based notes and spreadsheets. Some women even created their own paper-based self-tracking systems, as they were dissatisfied with self-tracking apps that did not allow for a comprehensive representation of their experience of endometriosis.
Discussion and Conclusion
All participants self-tracked their disease in some way and were overwhelmingly enthusiastic about self-tracking. Women expressed frustration that existing self-tracking apps that they had used or were currently using did not represent their experience of the disease in sufficient granularity and that such apps did not capitalize on patients’ needs to participate in research through self-tracking. Participants showed a strong altruistic desire to help women with endometriosis through participatory research and were particularly excited about the use of self-tracking to support citizen science. Women also expressed a number of hypotheses about their disease and were interested in exploring these ideas in partnership with researchers. Participants also felt that self-tracking could help them better self-manage their symptoms, and that this particular aspect of self-tracking could serve as an additional driver to engage women. Although women were very optimistic about self-tracking as a participatory research activity, they did have some reservations. In particular, women thought self-tracking might be depressing, given that patients experience many negative emotions and symptoms in relation to their disease. However, women were so motivated to participate in citizen science and to help other patients that they were willing to overlook this particular drawback.
This study confirms that women with endometriosis are very willing to self-track as a participatory research activity and that the variables women want to track will be helpful to researchers, are missing from what is currently known about endometriosis, and can be tracked.
Our findings also indicate that women with endometriosis are a particularly good population to engage in participatory research given that they feel their symptoms are often ignored or dismissed by physicians and that they have many questions about their disease that have not yet been answered through biomedical research. Therefore, there exists an opportunity for endometriosis researchers to study endometriosis by including patients as active participants in phenotyping research, or understanding the clinical manifestations of the disease. This result is consistent with previous research since studies have documented high levels of social isolation among women with endometriosis,  In addition, the basic psychological needs scores assessed in this study indicate that women with endometriosis experience lower levels of relatedness satisfaction and satisfaction of other basic psychological needs, namely feelings of autonomy over the disease and competence in symptom management, in comparison to their other psychological needs. Self-tracking as a participatory research activity can also help women feel more competent in managing their symptoms so that they can have greater autonomy and control over their lives.
The themes described in this study may be useful for researchers working in other chronic diseases that are enigmatic. In particular, researchers working in diseases such as arthritis, irritable bowel syndrome, and fibromyalgia may find it useful to employ citizen science with populations that feel disconnected from the medical and research communities in order to overcome the challenges associated with tracking a wide range of variables and to better connect patients to these communities. Finally, our findings support our long-term goal of developing a mobile application, Phendo, to engage patients as active participants in phenotyping that allows for tracking customizable endometriosis symptoms as they occur throughout their menstrual cycle. Our approach aims to shift the way endometriosis research is done, by capitalizing on the self-tracking needs of patients and engaging them further as active participants in endometriosis research.
We would like to thank the Endometriosis Foundation of America for helping us recruit participants and providing space to conduct the focus groups.
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Copyright: © 2016 Mollie McKillop, Natalie Voigt, Rebecca Schnall, and Noémie Elhadad. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.