For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire

By Kathleen Hoffman, PhD, MSPH

September is Ovarian Cancer Awareness Month. The Ovarian Cancer Research Alliance (OCRA), Inspire’s partner, is holding its 2020 National Conference, “Uniting for Hope,” virtually from Sept. 29 – Oct. 2 this year. One of the conference’s popular gatherings is always “Ask the Experts,” Q&A sessions between attendees and specialists. The topics this year include genetic testing, clinical trial participation, and managing recurrence. Another top event is the Teal Takeover Party, where Teal Sisters and their friends get to celebrate each other — including people who have survived over 30 years with this disease.

Regarding the science, OCRA is another example of a “tipping point” patient advocacy organization that has gone beyond advocacy into directly funding disease-specific research; OCRA is the largest private funder of ovarian cancer research, having raised over $100 million since 1994, and is also the only ovarian-cancer dedicated voice on Capitol Hill advocating for research funding into the disease and for other health policies affecting women.1 Their mission is straightforward: “To cure ovarian cancer, advocate for patients, and support survivors.2

Given that an estimated 22,530 new cases of ovarian cancer occurred in the US in 2019 and the 5-year survival rate is only 47.6%, there is intense interest in scientific breakthroughs and in each others’ well-being among the membership of the Ovarian Cancer Support Community on Inspire.3

But the need for information and support is great. Beyond the engagement that occurs among members of this community, in the last 12 months, close to 300,000 users affected by ovarian cancer engaged across all of Inspire with over 10 million pageviews. These interactions cover a wide spectrum of topics relevant to the ovarian cancer health journey — from newly diagnosed cancer types (i.e. high/lower grade serous), treatment information, clinical trials, recurrence, and encouragement/support.

Members of the Ovarian Cancer Support Community on Inspire are there for each other, providing active support:

…It’s a very scary disease… Doctors, oncologists, nurses, they know how to treat you and they can comfort you, but most of them have never had cancer and obviously they really can’t explain a lot of things that are going to happen, like someone that has it or has had it and is fighting it… a lot of the members are going through the same stage of cancer, the same kind I have, and it… helped me learn a lot about my disease through other people. — Inspire Member

Every day, members share experiences, from products they’ve tried for healing mouth sores caused by chemo (“Found the best ointment for mouth sores during chemo and when on [drug name]!”) — to learning of a mother’s ovarian cancer recurrence. What they find they have in common with others, or discover that is unusual in their case, is information they can take and discuss with their providers. In the process, members are creating a living resource for other people with their disease.

They go from not knowing what to ask to having a list of questions that could reveal new areas of treatment to explore. And OCRA is there for them, providing accurate information and expert resources.

OCRA’s “Uniting for Hope” conference brings together science and sisterhood. Mark your calendar and check out this agenda.

Download this case study, “Rare Disease Patient Insights for HEOR”

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