We’re really pleased to welcome one of our founding partners, Ovacome, to our blog this month. Ovacome have been with HealthUnlocked since 2010 when we launched our first version of the platform.
March is an important month for Ovacome, as it is Ovarian Cancer Awareness Month (OCAM). Because ovarian cancer is usually diagnosed late, awareness of the disease and of the early symptoms of the disease is one of the key health priorities. Here to talk about awareness and the wider issues in ovarian cancer is Louise Bayne, the Chief Executive of Ovacome. Welcome Louise!
— Matt Jameson Evans, Co-Founder & Chief Medical Officer, HealthUnlocked
Can you introduce yourself and Ovacome to the HealthUnlocked community?
Hello, I am Louise Bayne, CEO of Ovacome. I have been in the post for nearly 10 years and before that worked as a nurse then midwife. I was in my 20’s when I had surgery for Ovarian cancer, which thankfully demonstrated a good pathology and proved to be a complete success.
What is Ovacome doing for Ovarian Cancer Awareness Month?
OCAM (Ovarian Cancer Awareness Month) has both an awareness and fundraising focus. We have been busy working with the media providing case studies etc. We also have some specific campaigns, which can be viewed via the link here.
In your experience, how important has peer-support been in supporting those affected by ovarian cancer?
Ovacome was created to offer peer support for all those facing the disease. We are now 18 years old, and one of our first programs was called Fone Friends, which was a telephone buddying service. HealthUnlocked have provided us with the infrastructure to bring popular linking and sharing activity into the 21st Century. One of the key issues of a cancer diagnosis is the isolation experienced and huge burden of communication that comes along with it, such as people crossing the street to avoid talking to you, or alternately being too intrusive. Sharing coping strategies and providing an environment where people can say “I know how you feel” and actually be qualified to say that, is really valued.
As an organisation, what benefits have you found in having a HealthUnlocked community?
We are a small group mainly with a health background. HealthUnlocked provides us with access to new skills, ideas and the ability to provide a service that whilst we probably would have done ourselves, wouldn’t have been as good (and I don’t have to employ the tech staff!)
As an organisation, what benefits have you found in having a HealthUnlocked community? What has been the feedback from your community members?
It varies widely. We have had some really great feedback. People do enjoy the site and the environment. There have been difficulties, and there are occasionally differences of opinion which require significant diplomatic skill, but on the whole it’s a wonderful place where people feel safe and confident in sharing. It’s even more warming when you witness the almost unimaginable kindnesses shown by members who you know to be in great need themselves, coupled by the huge sadness when a cherished member passes away.
Early-stage diagnosis has been a big issue in Ovarian Cancer. Do you feel there’s any progress being made in improving things?
Not at the speed we would wish it to be! Certainly there have been some improvements in access to diagnostics, but the diagnostics themselves are the same as they were 20+ years ago, and not that great. There has been significant investment by the UK Department of Health in cancer symptoms awareness campaigns over the past few years, so we hope that prompter referrals and better diagnostic experience will result, but we still see 32% of women diagnosed in A&E (which is associated with a poorer prognosis). The good news is that the UKCTOCS study reports at the end of the year, which if positive will possibly lead to a national screening program.
Are there any new developments coming up in treatment or therapies for Ovarian Cancer?
Yes. It’s been a busy time in Ovarian cancer therapies, with developments in surgery and Chemotherapeutic approaches. As always, NICE (National Institute for Clinical Excellence) is a big hurdle, but we have some more exciting therapies, which should make it into general oncology practice in the next 36 months.
HealthUnlocked worked with you to create the BEATonline awareness app. What has the reaction been to this?
Fantastic. We used research findings from a variety of sources to identify what some of the diagnostic hurdles were and then rolled up sleeves and created a solution. We know that women have been diagnosed as a result of using it which is fantastic. It has been well received in the community, and is found on such sites as NHS Choices. It makes life simpler for GPs too so a great resource all round. We are hoping to work with you soon on a mark 2 version, and would strongly recommend it as a model for improving communications with healthcare providers.
Note: The BEATonline awareness app can be accessed here.
If there was one thing you could tell the world about ovarian cancer what would it be?
Can I have two? I suppose the first would be that it is essential to understand your family’s cancer history on your Mum AND Dad’s side. If anyone on either side has breast or ovarian cancer, you need to talk to your doctor about it. The second thing would be that smear tests don’t have anything to do with your ovaries!