Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease

Recently, Adrienne Pichon, a member of our lab published a research paper titled “Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease”. On October 19th, Adrienne presented the paper at the 23rd ACM Conference on Computer-Supported Cooperative Work and Social Computing! The paper discusses the complexities of the patient-provider relationship, which is further complicated for enigmatic conditions (ie, endometriosis). This research will help guide development of tools for patients and their care team to understand, communicate about, and manage their illness.

We wanted to understand how women living with endometriosis care for their condition, on their own and in partnership with providers. There were two research questions: (1) In the work of patients and providers when caring for endometriosis, what aspects of their work pertain specifically to such a complex condition? (2) What role does technology play in facilitating the partnership and the success of endometriosis care, and what opportunities are envisioned?

Talking with Patients and Providers

Image 2. We conducted semi-structured interviews with 10 endometriosis specialists with a range of experience levels. We also held 5 focus groups with 21 endometriosis patients with a range of disease experience like years since diagnosis

We interviewed 10 providers and had focus groups with 21 endo patients (Image 2). The providers were endo specialists that included surgeons, gynecologists, physiatrists, pelvic physical therapists, and pain specialists. We also had five focus groups with endo patients with a range of years diagnosed. The focus groups were mostly done virtually and were incredibly profound. Patients shared their endo journey, including their health status, how they self-manage, and their relationship with their care team.

What we found

Shared decision making and partnership is something that is strived for in all of healthcare, the problems that we highlight here are what is specific about endo that makes it so hard for both providers and patients to feel like they ‘re making progress in patient’s journeys.

Due to the lack of medical guidelines and expertise with endometriosis, there is uncertainty and frustration in care. This is due to the difficulty of making sense of what is going on and figuring out the best treatment.

“It became this trial and error, […] ‘Let’s try this because there is nothing else left to try.’ It was exhausting.” [patient]

“They are almost exasperated when you don’t feel better. I do think that it comes from their own frustration with endo.” [patient]

“We don’t know enough about endo to dictate medications or procedures. I have to encourage patients to be involved with the process.” [provider]

The complexity of endometriosis can be overwhelming for both patients and providers. Since multiple body systems are affected, patients experience lots of symptoms in domains beyond just period pain, like fatigue and GI problems.

“It’s easy to get caught in the different kinds of pain in the different organs. But I think assessing the different kinds of pain also helps linking things together.” [patient]

“Endo is multi-system, they feel a lot of things in different spots and it’s hard to sort through: Did you feel a fleeting pain or was this really disabling?” [provider]

The chronic nature of the disease adds difficulty in the communication between the patient and the provider. Particularly, patients and providers have different perspectives about the granularity of endometriosis.

“It can be really hard to sort through, if they are like ‘and on this hour I felt this way and that way.’ Most of us think in terms of weeks instead of days.” [provider]

“For me, it’s such a daily thing. It’s hour-by-hour, day-by-day […] so when a physician asks me, ‘How have you been in the past three months,’ that’s kind of a tricky answer.” [patient]

Patients talked about taking on the role of becoming their own advocates and providers emphasized getting on the same page as patients with knowledge and expectations. So, patients and providers are left to negotiate knowledge and expertise, attempting to align perspectives when there is so much uncertainty and complexity with the illness.

“I really had to do my own research, tons of hours put into. I feel like I’m a bigger endometriosis specialist than my own doctor.” [patient]

“Compared to other conditions I take care of, I found most women that are affected with endo are very well versed in the condition.” [provider]

How can we fix this?

Image 3. We identified three design opportunities; 1) To construct a holistic representation of the illness; 2) Help reflect and make sense of the illness experience; 3) Support collaborative work and actively correct misalignments

We identified a wide range of features and opportunities for designing technology to help meet these needs (Image 3): 1) Construct a complete view of the patient illness experience; 2) Reflection and sensemaking through visualizations; 3) Support collaborative work between patients and providers.

Details of these design ideas can be found in the paper, but here we discuss the idea for collaborative work. Several providers suggested designing “self-tracking prescriptions” to support the trial-and-error approach to treatment and self-management. Patients and providers would collaboratively select key symptoms, triggers, behaviors, treatment, or self-management strategies to track consistently for a specific period of time. One provider noted the potential for collaboration: “These are the symptoms that are important to you. These are the measurements that are important to me. Let’s see if we can narrow down.”

We want to thank the patients and providers for sharing their experiences with us, and for Phendo users’ continued and ongoing contribution to much-needed endometriosis research. We will continue to work on the technology discussed in this study, test prototypes with users, and then pilot test the new tools in future research.

Current Research Opportunities:

  • Take a short survey on managing your health during the past year! You do not need to have endometriosis to participate, we are comparing those with endo to those without. Eligibility criteria are: 1) U.S. resident; 2) 18 or older; 3) Not assigned male at birth. Take the anonymous survey here.
  • Download Phendo, an app to track and manage your endometriosis! Download Phendo for iOS here and for Android here. For more information about our research and Phendo visit www.citizenendo.org/phendo.

Have any questions? Email us at citizenendo@columbia.edu

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.