PATIENT VOICE – EXPERTS BY EXPERIENCE

Client: Asia Patient Action Groups

WSA’s experience with empowering patient voice translated well to South-East Asia, where Wendy Sugarman along with Helen Garforth of Just Ideas facilitated three days of sessions aimed at those working with patients and to empower patients themselves.

Women holding paper cut-outs.

The patients came from Patient Action Groups from nine different countries to network and share their experience, as well as learn how to share their stories to advocate for better patient-experience outcomes for all people living with rare diseases, multiple sclerosis and diabetes.

The sessions focused on ‘Finding and Using Your Voice’: they were designed 
to support participants to share their experience and develop their confidence in this.

We created a ‘museum of lived experience’ as part of the session, and people shared honestly and passionately about the challenges they face.

Working together, the group looked at techniques to address the challenges and how they can share their story to affect change.

A letter from Bangkok

Shambhavi (Shamy) Ravishankar, one of our participants on the Bangkok training programme, wrote the following:

My name is Shamy and I have Alagille Syndrome. As a rare-disease patient, attending this training programme was such an immense learning!

The training programme was a wonderful experience where both the meeting of the minds and of the hearts took place. We laughed, we cried, and we shared in each other’s experiences as patients, as parents and as rare-disease advocates.

As we went through the training, not only did we gain skills in successfully running or working for our rare-disease organisations, we also learnt to find our voices. And how to use our voices effectively to fight for the rights and dignity of the rare-disease families in our countries.

Shamy Ravishankar talking into microphone

We learnt the power of international and regional cooperation and collaboration! We were separated by language, culture, and countries, but we were united by our shared vision: A world of dignity, respect, and empathy for our rare-disease warriors and families, as well as for sustainability in accessing cures and treatments.

One of my biggest takeaways personally was to never be afraid to make the ask, from whomever. Whether it is a governmental official, or a potential donor, if you do not ask, they don’t even have the opportunity to consider it.

The manner in which you make the ask is equally important. Using your personal story, and portraying it with positive energy, has an important role in the overall negotiation and persuasion process. Tailoring your message to your audience helps in that endeavour.

The training activities emphasised drawing out our thoughts and ideas, making them more impactful than a lecture. We were made to think and draw on our experiences and innovate ways and means to engage.

It made me feel like the answers are all within us, and that we need only be trained to ask the right questions of ourselves
to be able to effectively communicate and interact with all stakeholders in the rare-disease equation. The training gave us the tools to use what we know and have, to make the impact we so desire.