Video Vignettes: Through Your Own Lens – Dealing With Side Effects

You wouldn’t think that someone could speak with delight about an experience with diarrhea. Yet when Amy,* a lung cancer patient, speaks about her search for help with “horrific diarrhea” in the video below, she sounds happy. Her relief at finding answers that actually worked to stop this side effect is palpable.

As she describes her experience, imagine yourself in her situation while undergoing treatment: experiencing unending GI urgency, or having such a severe scalp itch that it interrupts your ability to sleep and begins to drive you crazy.

As Amy relates, even if an individual goes to their healthcare provider with strange symptoms, they may not get the advice they need. Without practical ideas or solutions for symptoms, quality of life can be severely impaired. On social media forums like Inspire, patients are sharing their symptoms and trying out solutions, often obtained through trial and error, with their fellow community members. They are helping each other through their journeys, through meaningful exchanges of practical advice.

The Inspire’s American Lung Cancer Survivor Support Community, created in partnership with the American Lung Association, is 70,240 members strong.  Active and eager to help, members provide personal information on subjects ranging from clinical trials to their cancer mutations and what has worked for them.

Only through deep exploration of the communication between patients can we learn the day to day challenges patients’ experience. Data from clinical trials or patient reported outcome surveys are just snapshots of the patient experience. Patient reported information gleaned from social communities is continuous, providing everyday descriptions, even on an hourly basis, of what is happening during the patient journey, whether it be symptoms of illness, side effects while taking medications, feelings about chronic conditions, living with disease as patient or caregiver and more. This valuable information can provide guidance to the unmet needs of patients.

Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. These online video diaries, also called self- or auto-ethnography, allow for a more intimate view of patient life, through their own eyes. These stories capture so much more than what can be gained from more traditional quantitative research methodologies. We are pleased to share these vignettes. Enjoy.

[An update on Amy from an email dated June 24, 2017: “After 33 treatments of opdivo my tumors have started to shrink. Largest is half the size. I am now in 36th and still shrinking and some stable. Amazing….INSPIRE is a brilliant caring wonderful site. A lifeline to so many people.  Thank you.“]

*Names changed for anonymity

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Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.