How did you get involved in patient advocacy?
I was diagnosed with multiple sclerosis in 2008, aged 28, and the process wasn’t a good experience.
I was handed a life-changing diagnosis by the neurologist and sent away with no guidance or help as to where to go for reliable information, support and services.
It was a steep learning curve for myself and my family to find out everything we needed to know about the condition, at a time when I should’ve been concentrating on my health.
I felt that if I was going through this there must be other people in the same position and I wanted to do something that would help to elevate the patient voice within the healthcare journey.
What do you do?
I do lots of things! I started by volunteering with various MS charities but soon began to work with other stakeholders and also in other disease areas.
Now, I not only work with the third sector, but also with industry, the NHS (including with the NIHR), clinicians, medcomms agencies, industry associations and individuals living with chronic illness.
I work locally, nationally and internationally.
Some of the things I do include speaking at events and conferences, I’m considered a patient key opinion leader, I provide consultancy and sit on steering groups and advisory councils, I write for various publications, I do media outreach work and I review patient-facing information such as ICFs, PILs, website content and lay summaries of clinical trial results and publications.
I’m also an Ambassador for MS Society UK, Lyfebulb and ADD International; Patron for ParaDance UK, Chilterns MS Centre and Cambs Therapy Centre; Committee Member for Asian MS; and I’m a member of the MS Society’s Equality, Diversity and Inclusion Reference Group, their Technology Forum, and their Research Network.
Plus I mentor upcoming patient advocates from various disease areas.
All this on top of a regular full-time job as a translator for a business intelligence company!
What do you enjoy about it?
What I love about it is the feeling that I’m helping to shape the future of patient involvement in healthcare and hopefully helping to create a future that sees patient needs being put at the heart of the industry.
I also enjoy the variety of work, the challenges that come with advocacy and learning new things.
One day I might be running a workshop on patient engagement for a pharma company, the next I could be developing a patient support programme, the next I could be speaking on the radio about chronic illness in BAME communities, and the next I could be writing an article for an industry publication on the impact of digital technologies on patient journeys.
No two days are ever the same! I’ve met such interesting people too and done some really interesting things but what keeps me going is when someone says to me that what I’m doing is making a difference to their life with chronic illness, to the industry or to the way their organisation works. That’s priceless!
What is the key area you are working on at the moment?
The two main things I’m working on at the moment are improving the way patient engagement is undertaken in the industry (i.e. with pharma companies, digital health firms, CROs etc., as well as with public health bodies like the NHS, NIHR and NICE) and also improving the diversity of patients who are able to optimise their healthcare journey, whether that’s through better diversity in clinical trials, whether it’s in patient engagement, whether it’s in access to services.
Obviously, COVID-19 has had an impact on all of this so I know that the coming months will continue to prove challenging.
What’s your biggest health information challenge?
For patients currently I think the two main challenges is the volume of information out there and being equipped to understand and filter the information so that what is retained is trustworthy, useful and relevant.
I often see information that still isn’t 'lay enough' either or doesn’t explain things well enough.
We need to have more co-production, where patients are involved in the information development process from start to finish.
How can PIF members help you meet that challenge?
I’d ask for everyone to be questioning themselves constantly 'how can we get patients involved in this?'.
There also needs to be recognition that not all patients are the same. So it’s about getting the right types of patients involved at the right times.
Also, make it easier for patients to be involved. Provide support and a variety of opportunities.
Make the opportunities accessible (e.g. commitment, location, timings etc) and ensure that patients are being valued for their time, experience, and expertise.
What’s the best thing about being a patient advocate?
I’ve really developed as a person as a result of my patient advocacy because it’s made me step out of my comfort zone and learn new things.
Believe it or not, I’m actually inherently a shy person but my patient advocacy has led me to speaking on stage in front of many hundreds of people and even on television.
I’ve had the opportunity to be involved in some amazing projects all over the world and done things I’d have never dreamt I’d get the chance to do.
I’ve even spoken at 10 Downing Street and been on Strictly Come Dancing as a result of my advocacy work.
And I’m also constantly learning and have met some wonderful people who have become an integral part of my network.
It’s also enabled me to turn the negative experience of being diagnosed with a currently incurable degenerative condition into something more positive.
Why did you join PIF?
I was offered PIF membership following my participation in a focus group in January 2017 that fed into PIF’s Perfect Information Journey project.
It was an Open Space event concentrating on improving access to information for people with long-term conditions.
I decided to become a PIF member because I wanted to be more involved in its work.
Access to good quality, trustworthy and relevant information is a key part of a positive healthcare experience and I wanted to be able to help make this happen.
What do you find useful about being a PIF member?
I’ve found being a member incredibly useful.
I’ve answered many member queries, participated in more events (I’ve spoken at several PIF conferences now), have written blogs for the website, reviewed and been consulted on reports, guidance and surveys, and have learnt a lot from the various webinars that PIF has run.
Being a member has also been a great way of being able to connect with other people who are producing patient information.
What top tip do you have to share on health information?
Getting the patient involved at the start of the information development process is crucial for producing relevant and understandable information.
Bring patients in as partners and don’t assume that we’re all the same.
We all have varying levels of skills, expertise, knowledge and experience that can add a great deal of value to the information development process.
Taking the time to recognise this and identifying the most suitable people for different stages of the process can make life so much easier.
What was your lightbulb moment in health information?
Shorter isn’t always better. Sometimes using more words can help produce a piece of information that is more understandable.