Learning from the experts, our patients: What does patient advocacy really look like?
We believe that clinical trials can only be truly efficacious if we treat patients as partners in their care, instead of subjects of study, and we’ve been leading this charge in patient-first clinical trials for more than 20 years.
By listening to the patient’s voice, we’ve created and developed products and services that push the boundaries of what’s possible for patient care in clinical research.
Part of our pledge to put patients at the heart of everything we do is our new blog series, Campaign Spotlight. This series gives some of our patient friends a platform from which to talk about their unique and often overlooked experiences living with their rare disease and advocating on behalf of others.
Advocacy is a state of mind
Kelly told us: “I love those penny-drop moments when you can see someone’s understanding transform in front of your eyes. The year before the pandemic, I clocked up more than 100,000 miles, sharing my story of living with XLH disease. I’ve told my story to rooms full of people at official events, and this past year, I’ve partnered with a medical student as a part of the Global Advocacy network to educate them about XLH disease as they finish their final year at med school. I’m also a huge supporter of the work that the XLH Network does.
“My journey to becoming an advocate, however, started way before I began talking about XLH professionally. I’ve been educating people about XLH for as long as I can remember.
“I’m in my 40s now, but I remember being away at a summer camp for disabled kids when I was about eight years old and over-hearing comments about how I was walking. I addressed those comments immediately and calmly, talking to this person about how I couldn’t help how my body was made and that my difference was just that – a natural difference – just like having different coloured eyes. I also learned around the same time that you can hold people’s attention if you’re approachable, friendly, and funny, and to engage and educate someone, you have to be able to hold their attention.
“I didn’t realise it, but these were defining moments for me and set me on a lifelong course for gentle but persuasive advocacy for myself and others like me. My advocacy is focused around a state of mind rather than being a set of prescribed actions. It’s about having the willingness, openness, and confidence to address a misunderstanding or situation and gently re-educate to change opinion, no matter where and when you encounter it.”
True advocacy is about whole-body health
“Most people assume that advocacy is centred around the obvious factors – that of how a rare disease affects your mobility and physical health. But true advocacy is about understanding that XLH disease can affect your body and mind. Some of my most important work is around raising awareness and improving understanding of the hidden impact of living with XLH disease and how it can affect your mental health.
“People with XLH disease can suffer from extreme self-confidence issues, and I’ve learned that, as an advocate, I can draw an awareness to this hidden impact, bring it out into the open, talk transparently about my experiences with mental health, and share solutions and resources with others, and carers of others, who are going through similar things.
“Such an important part of advocacy is about validation. When you are transparent about your own struggles with someone, you can make more of a difference.”
Successful advocacy is a moving target
“Successful advocacy for me means to be known for making a difference, but that can be defined in many ways. Some days it’s talking about my story in front of hundreds of people or presenting a prestigious award at a national ceremony. Other days it’s being honest about the fact I need to rest, openly unplugging from my email and social media, and choosing to veg out on the sofa with my husband.
“The common thread in all of these experiences is the sharing of my authentic self, and I’ve learned over the years that only by sharing my authentic self can I deliver success.
“I really struggled with my purpose in my 30s. I suffered from depression after the realisation that I couldn’t cope with working full time anymore. Although it was a hard time, it was valuable learning to be honest with myself and others. One of the most important things you can be as an advocate is honest, and I don’t think I would have been such a successful advocate if I hadn’t learned to be honest with myself first.”
Thank you to Kelly for taking the time to talk to us about what being a successful advocate for XLH disease means to her and for sharing her story so candidly.
For more information about Kelly’s work with the Global Advocacy Alliance, visit their website.