My Experience on the Patient Leadership Council

Editor's note: This article was written by Patient Leader Lisa Marie Basile, who writes and moderates on AxialSpondyloarthritis.net. You can read more of her articles on AxialSpondyloarthritis.net here.

You can learn more about Health Union's Patient Leadership Council here. Applications for 2024 will open in October 2023!

My time on the PLC

Founded in 2020, the Patient Leadership Council (PLC) is a select group of Health Union Patient Leaders and Social Health Award winners who give feedback on Health Union projects. PLC members offer valuable feedback on various Health Union initiatives, and they are a key part of ensuring that our efforts remain community-centered, inclusive, useful, and accessible.

PLC members represent diverse voices across our communities. Here, former PLC member Lisa Marie Basile shares details about her rewarding experience serving on the council. Lisa is a Patient Leader living with ankylosing spondylitis who served on the PCL from 2020 through 2022.

It's been a few years since I joined Health Union. To be completely honest, I didn't really realize how much writing about and directly engaging with our chronic and terminal illness communities would change my life.

I was already working as a journalist, and I'd written about health in general quite a bit. I felt comfortable sharing my experience, but it was always to a general audience. Writing for a direct audience of people with ankylosing spondylitis (AS) or axial spondylitis (AxSpA), though? Not as much.

This was a chance to share my experience in all its nitty gritty, to learn from others, and – above all – to support others through moderation in our communities. It's more than writing. It's connecting.

When I applied to be part of the Patient Leadership Council in 2020, I remember how excited I was to get to the interview and land the role (which lasted for 2 years during COVID-19).

I felt very driven to provide feedback to such a groundbreaking organization as Health Union

There are other websites that provide community platforms, excellent editorial, and patient perspectives – but not in the caring, inclusive, unique, truly supportive way Health Union does. And it excited me to be able to give feedback to the company on how to leverage Patient Leaders – it was a way to peer behind the proverbial curtain.

I think it's critical to not only include actual Patient Leaders as a foundational layer to your business model, but to actually use their feedback and ideas. If you run a business that showcases the voices and stories of people living with chronic or terminal conditions, their critique or inclusion is ideation is key.

Making an impact

During my time on the PLC, we chatted about how the WEGO Health team became part of Health Union, and became the Social Health Network (SHN). We also discussed the company's goals and directions, especially around the SHN, which was incredibly exciting. The SHN is designed as a "network of patients, caregivers, and healthcare professionals with the goal of bringing empathy, support, and humanity to healthcare through the power of social health."

As a Patient Leader myself, I appreciate the SHN's offering of a community, paid opportunities, and training sessions for Patient Leaders. And it was great to see discussions and ideas circulating around the formation of the SHN.

In the end, I never set out to turn my AS experience into a work experience or even a community experience. I was even nominated for several awards, leading to being a finalist in a few Social Health Award categories.

Honestly, I thought it'd be me and my disease – this dark, constant, unpredictable thing – alone, getting through each day or each flare. But instead, AS has allowed me to meet people, learn things about community and outreach and the power of platform, and gain not only writing but feedback and engagement skills.

I'm grateful to be here, and to make an impact in whatever way I can. Here's to the next round of PLC members!