The Many Paths to Patient Advocacy: Interview with Trishna Bharadia

In November 2023, I attended the Healthcare Businesswomen’s Association (HBA) Annual Meeting in Chicago. I went to network and learn from inspiring women in the healthcare industry, but it was also a bit of a personal experiment: it was going to be the first time I went “public” with my multiple sclerosis diagnosis among strangers. Up to that point, I had told my family and close friends, as well as some people in my professional network. I made the decision to test out what it would be like to network, using my MS experience as a key factor of my elevator pitch, as a way to experiment with the feeling of being a patient advocate.

In my networking, I had some great conversations and met amazing women – one of whom was kind enough to connect me with another MS patient advocate, as she thought we’d have a lot to talk about. I was in the beginning stages of thinking through my blog and ways I could help others living with MS, and needed some guidance and inspiration.

She shared so many insights on our call that stuck with me. In particular, she emphasized that patient advocacy can mean MANY things.

“Remember that advocacy is really broad and there are many different ways to get involved – whether it’s advocating for yourself, other people, or the much wider patient community,” said Trishna. “If you try something but it’s not working for you or you’re not enjoying it, that’s fine – there are plenty of other things you can try instead!”

I left our conversation feeling so incredibly inspired and motivated. I knew I wanted to feature Trishna on the blog and share her perspective with others. Check out our interview below:

KB: How do you define patient advocacy?

TB: For me, it’s anything that someone or an organisation does to ultimately improve the outcomes and experiences of people affected by illness and/or conditions – with “people” including both patients and caregivers. This can be as simple as having a chat with a friend to help them to better understand the challenges you might face day-to-day living with a condition or disease, or it could be lobbying authorities for better access or improvement to health services or medications, or it could be working with a pharma company to improve the design of their trials so that more people have the opportunity to participate, or it could be collaborating with a hospital to improve communication skills of healthcare professionals – that’s just a small flavour of what it could mean. It’s so wide-ranging and when people ask me about patient advocacy and what it involves, they’re often surprised at just how broad the field is and the plethora of opportunities there are to get involved and make a difference.

KB: What motivates you to be a patient advocate?

TB: My journey into patient advocacy was primarily born out of two factors:

• My diagnosis experience (for multiple sclerosis – I actually live with several chronic conditions) wasn’t great. I was given this life-changing news that I had an incurable, degenerative neurological condition and was more or less sent on my way with no information or signposting to support or services. I felt like my family and I were in a black hole, there was very little support for shared decision making, and it was very disempowering. I knew I wanted to change this so that others had a better experience.
• Being of South Asian heritage meant I faced certain challenges that my non-South Asian counterparts weren’t experiencing. There’s a lack of awareness about MS in the South Asian community because MS has traditionally been seen as a Caucasian disease; disability and illness isn’t spoken about – it’s swept under the carpet and there’s a lot of stigma and prejudice associated with poor health particularly because it can challenge cultural ideals; plus there’s many myths and misconceptions about illnesses and you’re having to sometimes address all this and explain things in a different language that might not even have direct translations for what you’re trying to convey. So, I wanted to start to breakdown down some of these barriers and start to educate people within the South Asian community about living with MS and other conditions.
• The thing that keeps me motivated so many years down the line (I was diagnosed with MS in 2008) is that we’re not there yet when it comes to optimal patient outcomes for all. There’s always more to do. Things are constantly evolving, which means that new challenges are always emerging – so as advocates our work doesn’t stop. It also helps that I absolutely love what I do. I feel like this was what I was supposed to do in life. Every day I’m grateful that I’m doing something that I’m intensely passionate about and that is hopefully making some difference to the world and to the lives of patients and caregivers.

KB: Why is it important for people with chronic illnesses, like MS, to be their own advocates?

TB: I think there are several reasons. Firstly, you know your body and circumstances better than anyone else so you’re always going to be your own best advocate. I think it can also help you to take back a semblance of control when often when we’re living with a condition it can feel like you don’t have much control over what your body is doing. And ultimately being more active in your own healthcare means that your concerns and needs can be heard.

KB: What is one example of how someone can advocate for themselves? 

TB: Learn about what standard of care should look like for your circumstances. So for someone living in the UK like me, that would potentially mean going to the NICE (National Institute for Health and Care Excellence) website, for instance, to see what the diagnosis and management pathway is for the condition that you’re living with. This can include what information and support should be offered to you, what care and ongoing monitoring (if applicable) you should be receiving, treatment pathways and more. If you’re fully informed, it will help to build confidence to address any gaps. For example, a frequent issue I hear about from people with MS in the UK is that they’re not monitored regularly, so I tell them to print out the NICE guidelines and show their healthcare team that NICE says that all people with MS should “have a comprehensive review of all aspects of their care a least once a year.” Just having that bit of paper in your hands can give you confidence to make your voice heard.

KB: How can being an advocate impact your health?

TB: There are positives and negatives. Depending on how much advocacy you’re doing it can be draining both mentally and physically. I’m always thinking about health, always talking to people who are often facing challenging circumstances, always thinking of the next thing I can do to help or support – all of this whilst also managing the mental and physical impact of my own illnesses. The patient advocacy community is tight and whilst we may not always know each other personally or necessarily see each other all the time, we have vast online connections. But given that the circles we move in are with people who are essentially sick, some of them very seriously, it does mean that we probably experience more loss than the average person. These losses hit hard because they’re people who as fellow advocates inspire and motivate us. All of this means we often have to develop our own tools and mechanisms for coping with these more challenging aspects that can have “negative” impact on your own health, whether that’s physically or mentally.

Despite this, there are also a lot of positives (more so in my opinion!) that advocacy can bring for your health. I’ve learned so much more about the conditions that I live with through being an advocate – it’s helped me to become an “expert patient” so to speak, which has had a big impact on decision making around my care and treatment choice – I’ve been able to make these decisions in partnership with my healthcare team. I’ve also built up a large network of healthcare professionals, researchers and others who I can call upon when I have questions or need advice. The advocacy world is also full of absolutely wonderful people who inspire me every single day and who make me feel supported and understood – some of my closest friends now are other patient advocates or people who I’ve met through my advocacy work. That’s been huge for my mental health, especially when being diagnosed with health conditions can often turn into an isolating experience.

I also feel that being an advocate has helped me to rationalise the “why” in terms of my diagnosis. It’s enabled me to create a positive focus for something that is a negative thing – being diagnosed with any type of health condition is never great, let’s be honest! So becoming an advocate helped me to turn that “negative” into a force for good, which, again, has been really good for helping me to mentally deal with living with my conditions.

KB: Is there anything else you’d like to add on the importance of patient advocacy?

TB: You should enjoy what you’re doing – it shouldn’t be a burden. And given that we’re never going to live in a world that is completely free from diseases or conditions and that every single person will be affected by this in some way (either themselves or a loved one) at some point in their lives, patient advocacy will always be important so everyone has a vested interest in doing their bit, however big or small that might be!

Trishna, I can’t thank you enough for sharing your insights and for encouraging us all to be empowered self-advocates!

About Trishna

Trishna Bharadia is a multi-award winning patient engagement consultant and advocate with ~15 years experience in the field. She works with multiple stakeholders, including charities/non-profits, academia, industry and clinicians, to better embed the patient voice into the healthcare ecosystem and medicines development lifecycle. She’s an Ambassador/Patron for MS Society UK, MS Trust, ADD International and Chilterns Neuro Centre, as well as a long-standing committee member for Asian MS. She also lectures on patient engagement and advocacy at King’s College London university. In recognition of her work, she was made an honorary member of the Faculty of Pharmaceutical Medicine (Royal College of Physicians, UK) and is a Points of Light awardee from the UK Prime Minister’s Office. She’s also a PharmaVoice100 honoree for outstanding contribution to the life sciences. In 2015, her advocacy work led her to being selected out of thousands of people to participate in a special four-part edition of Strictly Come Dancing (Dancing with the Stars), telling her MS story to millions of viewers on this prime time TV show on the BBC!

Find her on social media:

Instagram: https://www.instagram.com/trishnabharadia/

X: https://x.com/TrishnaBharadia

Facebook: www.facebook.com/trishnabharadia2015

YouTube: https://www.youtube.com/@TrishnaBharadia