“Is mastectomy the right choice?”
“Will I feel pretty without any hair?”
“How will surgery affect my dating life?”
A woman’s mind buzzes with questions from the purely pragmatic to the very intimate following a breast cancer diagnosis. Doctors can dish out medical advice, but often other patients offer the best reassuring medicine: their own stories of treatment and recovery.
“There are a number of research studies that support the notion that telling and hearing stories can be therapeutic,” said George Washington University physician and Associate Professor of Emergency Medicine Neal Sikka. “But it’s hard to accumulate a lot of stories and identify which ones are the most helpful.”
Moreover, health information privacy laws restrict doctors from connecting patients to others who have gone through similar medical situations. Dr. Sikka interviewed physicians locally and around the country and found many searching for ways to offer their patients more emotional support outside the time constraints of a doctor’s office visit.
That led to the mobile application HerStory. Dr. Sikka worked with 22Otters, a California-based digital health startup, to develop the app aimed at bridging the gap in patient-to-patient communication. The free app, which launched this month and is available through mobile app stores, provides a platform for women to listen to and share breast cancer stories.
As chief medical officer for 22Otters, Dr. Sikka serves as a clinical consultant. 22Otters first developed “coaching” apps to help patients prepare for complicated medical procedures, such as colostomies and colonoscopies. With one such app, patients can record conversations with their doctor, view step-by-step instructions on surgery preparation and post-operation recovery and receive reminders. Dr. Sikka and his team leveraged that technology to create HerStory.
“We knew that almost everyone has been touched with breast cancer in some way,” Dr. Sikka said. “It’s really prevalent, people are aware of it, but we didn’t see this type of tool available.”
According to the National Cancer Institute, breast cancer is the second most common cancer in women, and an estimated 232,000 cases of breast cancer will be diagnosed in the United States in 2014 resulting in more than 40,000 deaths.
“We wanted to create a way for patients to hear about others’ experiences and to talk about their own,” Dr. Sikka said. “While there are online blogs and forums for this purpose, they are kind of flat, since they are in a written format. Or they’re very public.”
HerStory users create avatars and then record short stories, tips or testimonies. Dr. Sikka is part of a team that reviews all submissions before they are posted on the app. Audio recordings allow the listener to connect with the speaker, but the recording maintains a level of anonymity not found in a Facebook post or video. If women are uncomfortable sharing their voices, stories can be re-recorded using a voiceover.
HerStory arranges content by topic. There are quick tips: “Order all of your medicines with non-childproof caps.” And there are humorous anecdotes: One user said that after her mastectomy, she began packing external breast prostheses at the top of her luggage in hopes that a TSA agent would open her bags and gasp.
Other content is deeply personal:
“I don’t think of myself as a vain person, but the first thing I thought about when I got my diagnosis is, ‘How would my body look afterwards?’ I started thinking about how people would see me once I had surgery,” a woman says in one recording. “I didn’t even think, ‘Would I survive this?’ All I was thinking was, ‘How would I look after I survived it?’”
Following each entry, users can “rate” the story with an indication whether it “motivated,” “reassured” or "informed" them, among other ratings.
Technology, Dr. Sikka said, can be a “double-edged sword.” Using digital tools does involve physical patient-doctor interaction, but it offers opportunities to “increase touch points” with the healthcare system. And with physician-created and approved apps like HerStory, he believes healthcare is moving in a more patient-centered direction.
“From the research we’ve conducted, we found that the key factor in getting a patient to use a technology like this is that the doctor recommends it,” he said. “It’s like a prescription.”
Dr. Sikka said he and 22Otters hope to expand the platform to support men and women affected by other health issues.
“We’re still at the learning phases of how this is all going to look,” he said. “But I think as long as we keep the patients and the physicians who are interacting with them in mind, then we will continue to build technologies that really address patient problems.”