“Innovation.” “Cutting Edge.” “Patient-Centric.” Boiling Down the Buzzwords and What They Mean for Real People with Celiac Disease

October 4, 2016

“Innovation.” “Cutting Edge.” “Patient-Centric.” Boiling Down the Buzzwords and What They Mean for Real People with Celiac Disease


Celiac disease research needs you!

Opt-in to stay up-to-date on the latest news.

Yes, I want to advance research
No, I’d prefer not to
Don’t show me this again

Beyond Celiac Director of Healthcare Initiatives Kristin Voorhees, MA, recaps a unique conference experience and how new thinking is shaping the future of medicine.

Stanford MedX Photo Collage


Picture 1, l
eft to right: Kristin Voorhees, MA, Daniel Leffler, MD, MS, Takeda Pharmaceuticals Inc. and Beyond Celiac Scientific/Medical Advisory Council, Aimee Corso, Beyond Celiac Board of Directors, Alice Bast, Beyond Celiac CEO, Patrick McGovern, Wondros

& Picture 2, left to right: Kristin Voorhees, MA, and Alice Bast, Beyond Celiac CEO)

By Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives

Innovation is a word that gets thrown around a lot these days. The buzzword is used by people from virtually all backgrounds and sectors to tout their work as “cutting edge,” though whether or not their claim is true is often debatable.

Specific to healthcare, one type of innovation is patient-centricity.

Doctors, scientists, government researchers, biotechnology, pharmaceutical and diagnostic companies, and other key stakeholders across the healthcare continuum are using the term “patient-centricity” to describe a fast-growing movement where patients are being invited to the decision-making table. While this model has gained traction only in the past several years, it’s one that Beyond Celiac has followed and advocated for since its founding in 2003.

In the true spirit of innovation, we are always open-minded and looking for new ways to best carry out the organization’s mission in support of driving diagnosis, advancing research and helping the celiac disease community to live better, longer. We know that change is often required to improve and deliver better support, information and programs to our community and we aren’t afraid to consider new ways to help you best navigate day to day challenges.

Enter human-centered design. Like patient-centricity, a critical focus is on the end user. However, each organization or company typically has a different approach to advancing a patient-centered agenda and the jury is still out on one consistent definition of what it means to be “patient centric.” This is where human-centered design can help.

It’s defined as a creative approach to problem solving that designs new solutions by incorporating the human perspective in all steps of the problem-solving process. And with respect to healthcare – at the end of the day, aren’t all humans patients in one way or another?

That’s why Beyond Celiac was honored to participate in and present at Stanford Medicine X 2016, an annual gathering of leading clinicians, researchers and educators that serves as a catalyst for healthcare innovation and patient engagement from September 16-18 in Palo Alto, California.

As Director of Healthcare Initiatives for Beyond Celiac, I participate in many medical and scientific meetings every year. I can honestly say that Medicine X was one of the most unique conferences I’ve ever attended, and dare I say it, one of the best.

Why did I like it so much? A key theme was vulnerability.

Everywhere you turned, a patient was sharing their story about the difficulties of navigating the healthcare system or what it’s like living with a condition that doesn’t have an effective treatment. It takes courage to talk about the shame, guilt, frustration, anger and disappointment that comes with you or your family member receiving a life-altering diagnosis.

Clinicians, researchers, patient advocates and business leaders had honest conversations about how they were forced to think differently after realizing their standard way of doing things wasn’t meeting the needs of the patient. Oftentimes this required them to step outside of their comfort zone and collaborate with technologists, storytellers, educators and leaders from other diverse fields. Asking for help is not always easy; it requires that you acknowledge that you don’t have all of the answers.

Hearing these stories and joining in these conversations got me thinking about the state of celiac disease. As a fellow patient living with this chronic autoimmune disease, I know firsthand that it’s not always easy to speak up about my gluten-free needs. You may be shocked to know that I still get uncomfortable when it’s my turn to order at a restaurant, my family starts to plan for Thanksgiving and Christmas dinners or I need to complete the dinner card that accompanies an invitation to a friend’s wedding.

While it’s important to recognize that it’s OK to have feelings of discomfort or anxiety, it’s also important that we recognize that life doesn’t have to be this way.

So I’m curious. I want to know how you’re managing on a daily basis.

I know that there are times when I feel alone with this disease; it’s challenging to completely self-manage a serious genetic autoimmune disease. The social, emotional and mental impacts really add up. It can also be challenging to find a knowledgeable healthcare provider that understands the diagnosis.

How often do you open up to others about your celiac disease? Do you or have you ever relied on others to help you manage? What was the experience like?

Our community members are already answering this question on the Beyond Celiac Facebook page. Check it out and join in the conversation below. Also, if you’re interested in learning more about the Beyond Celiac presentation at Medicine X, you can read more here and here.