Bridging the Digital Divide: A Platform for MBC Patients
PATIENT PERSPECTIVE

Turkish entrepreneurs aim to build on their success informing and connecting cancer patients with a new digital platform for the metastatic breast cancer community.
 

In the four years since Turkish entrepreneurs Ebru Tontas and Esra Urkmez started the non-profit organization Kanserle Dans (Dance With Cancer), it’s become one of Turkey’s most popular online cancer information and support platforms. The group’s Facebook pages have some 65,000 fans; thousands follow the organization on Twitter and Instagram; and weekly webinars on topics such as treatments, tests, managing side effects, psychology, and legal issues have attracted 100,000 viewers. In 2015, Ms. Tontas and her team realized that despite their success informing and supporting the Turkish cancer community at large, metastatic breast cancer patients remained underserved. "We’re really one of the most innovative nonprofits in the oncology space in Turkey," says Ms. Tontas, "but MBC patients remain a very neglected community. Most people, including the patients themselves, still don’t understand what MBC is, and while there are a lot of resources for breast cancer patients, there is nothing specifically for MBC patients."

That’s about to change. In coming months, Ms. Tontas and her team will launch a  suite of digital services for Turkish MBC patients, caregivers and families, centered around a smartphone application. With the app, MBC patients will be able to monitor, track and graph their symptoms; share information with their doctors; receive push notifications such as medication reminders and motivational messages; access a multi-media library of clinical and practical information about MBC; and engage with patient experts, among other things. Kanserle Dans also plans to expand its existing website to include an MBC-specific forum and database; debut a series of 50 webinars on topics including MBC clinical trials and end-of-life issues; and launch an MBC-specific Facebook group. The group’s comprehensive digital initiative takes into account Turkey’s relatively young population: Women under 40 years of age represent 68% of the total population and 17% of all MBC diagnoses. "It’s the first full-service community and social-support network for MBC patients in Turkey. There is nothing else like it," says Ms. Tontas, who won funding for the platform from Pfizer and the Union for International Cancer Control (UICC) through a Seeding Progress and Resources for the Cancer Community (SPARC) grant.

The platform will also be a boon for Turkish practitioners, policymakers and researchers. While rough population-based calculations suggest some 16,000 Turkish women are diagnosed with MBC annually, there are no statistics on the number of people living with the disease in Turkey. Kanserle Dans’s forum and app aim to close this information gap by tracking users’ data anonymously, providing Turkish decision-makers with invaluable information on the state of MBC across the country. Users will divulge key information on, for instance, the kinds of metastases they have, the date of their diagnosis, where they live, and what treatments they’ve received. "We’re hoping to gather some information that will show us what kind of services are still needed," says Ms. Tontas, noting that they’ll share their data with the Turkish Cancer Bureau and Ministry of Health. Other countries may benefit from the platform too. While the app will be available only in Turkish and English at first, Ms. Tontas believes its simple interface can easily be adapted to other languages and cultures. Nearby Iran and Azerbaijan are among the group’s first expansion ideas. "We hope we can build on our success to support MBC patients wherever they are," says Ms. Tontas.