A Patient-Centered Approach to Tackle Crohn’s Disease

By Sacha Heppell - December 03, 2020

“There's a lot of internalized ableism all over Asia, where we really don't talk about anything that comes across as a “flaw” - and a disease, unfortunately, looks like a flaw. You talk about your successes in life, your goals, and ambitions but when it comes to a bowel disease oh my god, if you're exposing that it's just like what are you doing? It was social suicide for me to come out with my story and I knew it would be.” - Tina Aswani Omprakash, Public Health Advocate

After a 14 year-long journey tackling Crohn’s Disease, 20 surgeries to treat the complications, and now permanently living with an ileostomy bag - the challenges Tina Aswani Omprakash had to encounter went far beyond her health condition.  In this powerful podcast episode, she pushes us to wrap our heads around the personal, social, and cultural complications that accompany Crohn’s Disease in the Asian communities and across the world - and how she strives to make a difference.  Here are the top highlights from this inspirational dialogue with Tina that we hope strikes a chord with you as much as it did with us.

 

Podcast Preview - Partnering with Patients on Medical Innovation - Interview with Tina Aswani Omprakash

The evolution of Tina’s journey as a public health advocate

Tina didn’t entirely fathom the real, grounding impact that her story and experience could essentially have on the millions of people dealing with Crohn’s disease. Before she knew it, she began connecting with several associations and non-profits to reach out to a variety of audiences across different communities who were tackling myriad digestive ailments that were also pushed under the similar label of stigma and shame.

Another aspect of Crohn’s patients that goes unnoticed and understated is the mental and psychological trauma that one undergoes. It’s not just about being diagnosed with the disease, it’s also what lies ahead.  The treatments, complications, surgeries, acceptance, learning to live with it, the daily struggle, and even near-death experiences like in Tina’s case - takes a toll on the patients and their families. She also emphasizes the need for doctors and families to step up and take the necessary measures to pay special attention to one’s mental as well as physical health.

Raising awareness of patient-centered innovation

While we do recognize the continued efforts in the medical sciences to embrace new opportunities associated with technology and innovation, with certain ailments, we still have a long way to go.  One such component that has been missing with Crohn’s disease is patient-centered innovation.

Tina believes in closely involving the different stakeholders like the -

- Patients, who really understand the core of the disease, know what they want and what is best for them to a certain degree 
- Doctors and scientists at the pharma companies, who could work based on the end-users’ needs to develop the best treatment options
- Engineers, who could factor in all of these suggestions to develop suitable and innovative digital health solutions to satisfy the unmet needs of the patients. 

There’s more in store for you...

If you want to know more about Tina Aswani Omprakash’s journey as a public health advocate, her advice for newly diagnosed Crohn’s patients, how you too can mentally adjust and thrive, her hopes for the future, and the benefits of engaging patients as partners to drive the change.

 

 

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