Accessing & Sharing Your Medical Docs: Citizen Endo Survey Results

Recently, we asked the Citizen Endo community to complete a survey about medical documents related to endometriosis. We had a great response: 212 of you completed the online questionnaire! Many thanks to all those who participated. We now want to share the results of that survey with the entire Citizen Endo community.

But first things first, why do we care about medical documentation, which, in all honesty, sounds pretty boring? Well, endo-related medical documents, such as pathology reports, surgical or post-operative reports, gynecology visit notes, and radiology reports provide invaluable information about a patient’s type of endometriosis and how they experience their disease. Connecting the different cell-level types of endo with the different ways women can experience their symptoms allows us to begin understanding the reasons for particular endo symptoms. If we understand why women experience particular symptoms, we can begin to think about better approaches to diagnosis and treatment!

So why do we also care about your ability share your medical documents? Because of the fragmented nature of the healthcare system and privacy regulations, researchers cannot easily nor most times legally access your medical documents. As an endo patient interested in contributing to research, it is necessary that you 1) have access to your medical documents (which oftentimes is not so easy!) and 2) actively provide researchers with these documents. We conducted this survey in order to understand how feasible it might be to have you, as endo patients, provide us, as researchers, with your medical documents. In addition, we wanted to know how you feel about sharing your data with researchers because, as a patient, you ultimately should have the right to control your own medical data. So, now, let’s get to the results.

A diverse group of endo patients participated

Participants represented a range of ages, from under 18 to 64 years young and were demographically diverse.

The most common age range among participants was 25–34. N=197 participants.

Participants came from around the world to take part — from as far as Trinidad and Tobago to New Zealand!

Overall, 196 participants who reported their location came from 16 different countries across the globe.

The large majority of you have been diagnosed with endo through surgery, although some of you have been diagnosed by a medical professional through other means. A small number of participants suspect they might have endo but aren’t sure.

Majority of participants were diagnosed through surgery. N=212 participants.

Most participants have had one or two surgeries for their endometriosis. A number of you, however, have had as many as six or more surgeries!

Most participants have had one to two surgeries. N=187 participants.

No one has great access to medical documentation, but if they do it’s on paper

However, if you do have access to a medical document, it is most likely a paper-based report from an endo-related surgical procedure or hospital discharge.

Access to medical documents from participants’ most recent surgery. N=186 participants.

Finally, It looks like electronic documentation for endo surgery exists, but its use among patients is pretty limited.

Access to diagnostic reports and gynecological visits isn’t a reality for most you

Most participants do not have access to doctor’s notes. N=204 participants.
More participants have access to radiology reports than doctor’s notes, but access is still a problem for most. N=204 participants.

Overall, most of you do not have access to your doctor’s notes from gynecological visits. While your access to diagnostic reports like pelvic ultrasounds is a little better, it still isn’t great and is mostly paper-based. This is a shame, since it means you don’t know how you are doing compared to the last time you visited, and you can’t learn about how your disease has changed over time. Moreoever, gaining access to diagnostic reports may provide a better sense of the progression and extent of endo and how it might be affecting the body. This is why we argue it’s so important to self-track endo symptoms. We created a smartphone app called Phendo to allow endo patients to do just this — self-track their symptoms as they occur and review their own data collected over time. The app also allows us as researchers to better understand the experience of the disease and work toward better treatments and a cure.

Although you don’t have great access to your medical documentation, you want to share it!

From the previous survey questions, it looks like access to your endo-related clinical documents like surgery reports, visit notes, and radiological reports is not great. However, endo patients overwhelmingly want to share the medical data contained in these documents with researchers! That’s great to hear, since we all know how much opportunity there is in trying to better understand the disease. Moreover, most of you are willing to share relevant medical documents electronically, which allows for speedier and more accurate review of data.

The large majority of participants want to share their documents. N=198 participants.

For those of you willing to share your clinical documents with researchers, we are working toward making this a reality. We’d like to make it easy, convenient and, of course, secure for you to share your medical reports and notes with us. Look out for updates and notifications from us by signing up for email from the Citizen Endo team at our research website. Specifically, we’re looking to find connections between your type of of endometriosis at the cellular-level and particular symptoms, as tracked through our Phendo app. Finally, if you have any endometriosis-related research questions, please let us know! We want to hear from patients like you as much as possible.

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

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