During the session, hosted by Rachel Power, Chief Executive of the Patients Association and Arun Mahtani, Vice President Channels Strategy and Digital Content at Teva, three patients, Olivia Fulton, Barbara Stensland and Daisy Swaffer, took part in a panel discussion to share their experiences about the reality of living with their chronic conditions and how they’ve benefitted from Teva’s new Life Effects initiative.
Life Effects is a digital platform shaped by patients, for patients, living with one or more chronic conditions. It explores the latest science and thinking around those conditions providing straightforward, useful insights. It offers tips and technologies to make things easier for patients and it shares stories about the reality of living with chronic conditions from people who have actually been there.
Olivia is a patient, former nurse and Patient and Public Involvement Lead at the Asthma UK Centre for Applied Research. She originally studied Sports Science, but her severe asthma prevented a career in sport. Olivia now blogs at ‘Anonymous Asthma’, sharing her experience of living life with severe life-threatening asthma and raising awareness about how severe asthma can be.
Click here to visit Olivia's overview on Life Effects
Barbara was diagnosed with multiple sclerosis in 2012. It began suddenly, with no warning, so Barbara’s entire life was turned upside-down. Not only did she lose her partner, but she also lost her job. Since 2012, Barbara has written a blog about her life with multiple sclerosis and her son, who she refers to as ‘The Teenager’, who is now at University.
Click here to visit Barbara's overview on Life Effects
Daisy had a burgeoning career in IT for most of her adult life until she had to stop working because of migraines, which manifested when she was 29 years old. It’s been two years since Daisy gave up her career and her quality of life is much better, but migraine frequently reminds her that she can’t have both.
Click here to visit Daisy's overview on Life Effects
When asked about Life Effects, Daisy said: “I’ve found Life Effects incredibly useful, not only for reading other people’s stories and sharing my own, but being able to direct the people in my life who don’t have migraine to read about it and to better understand what my life is actually like and how they help me with that. And so, I think it’s much more than a resource just for patients. It’s for the people in our lives as well.”
When asked if the content is edited or moderated, Barbara said: “We’re not directed to write about any particular topic and we’re not told what to submit. We can upload whatever we like. It might go through a little bit of editing but otherwise it’s all completely in our own voices. And I think that really makes a big difference to people who are reading it. They can read, they can tell, they can feel that it’s a genuine patient talking to them. Not someone whose got an official hat on.”
Daisy commented: “I never proofread anything that I write because that’s my emotion at the time of writing. And with Life Effects, that was the conversation I had with Teva beforehand – I didn’t want my writing altered because that’s how I was feeling at the time and it could be angry or happy or whatever. The good thing with Life Effects is that my emotion is still there.”
Olivia noted: “When I first started blogging, I saw it as a way to get things off my chest and it was just something to do. But about seven years ago, I realised that I don’t have to be ashamed of having asthma, and speaking about my experience and how it affects my life is actually a good thing because it helps other people”.
Arun said: “It’s so important for us (at Teva) that Life Effects reflects the real patient voice. I’m excited and thrilled that you guys feel like your voice is really being captured and we’re actually bringing that forward. We bring all these amazing voices into one place and we use a little editorial skill to frame everything. We also make sure the stories are medically accurate. They are checked by doctors and our medical professionals so readers can rely on them.”
“Life Effects has to contain credible, authentic patient voices saying what you guys really feel because that’s the message we received loud and clear in our research. People really want to hear from other patients. Many times people say they have a family, they love their family, but they have no idea what they’re going through. And that’s even after 10 years or 20 years of being with them.”
Teva’s Life Effects initiative. Available at: https://www.lifeeffects.teva/eu/