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Your Social Media Conversations Matter in Celiac Disease Research

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Celiac disease research needs you!

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Your voice drives celiac disease research. Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives breaks down how. 

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By Amy Ratner, Beyond Celiac Medical and Science News Analyst 

With the power of your voice, Beyond Celiac is helping to shape a new model for engaging patients in research. Kristin Voorhees, MA, Director of Healthcare Initiatives, recently met with healthcare industry representatives at the Patient-Centered Clinical Trials 2016 conference to share the strategies Beyond Celiac is using to connect patients and researchers.

Across the healthcare field, patient’s stories are shaping what researchers study and how they study it. “We have direct evidence that the community's interests in research news and participating in research are quickly increasing,” Voorhees says. “We are proud to share this information with the rest of the world.” Through the Beyond Celiac Research Opt-In, a growing group of engaged community members is spending four times longer reading content related to research than any other content on BeyondCeliac.org.

Beyond Celiac regularly partners with biotechnology and pharmaceutical companies to assist in the recruitment of patients for clinical trials, which are seeking to find alternative therapies outside of the gluten-free diet alone. For example, in 2014, Beyond Celiac helped to recruit patients for a phase IIb clinical trial by sharing information on digital and social media. We developed this strategy based on regular interactions with our online community. Even 10 months after first promoting the study, the community’s interest in participating continued to grow. And Beyond Celiac was a top recruiter for the trial due to a long-term and consistent relationship with our research partners.

CEO Alice Bast presented the patient engagement strategies Beyond Celiac is using to guide this kind of work at the International Society for Pharmacoeconomics and Outcomes Research 21st Annual International Meeting. We have shared findings at multiple conferences as a result of engaging with you online, and we are continuing to develop new ways to connect patients and researchers.

Informed and engaged patients are the gears that will drive celiac disease research into increased diagnosis, better treatment and more. Only you can provide a real-world view of what it’s like to live with celiac disease and what advances are meaningful. Beyond Celiac regularly engages patients in social dialogue about their needs and wants by creating a conversation with the larger community, with the goal of advancing research and ultimately finding a cure.

But you might wonder exactly how you fit into this conversation and what research means to you. Here are a few questions you might have and some answers from Kristin Voorhees to ease you into engaging in meaningful ways.  

What are some of the most important, but often overlooked, things that researchers must take into consideration when they want to include patients in research?

What happens to patients in the real world needs to be taken into consideration, including your needs and emotions. The complete patient experience, not just what’s shared in a brief clinic visit, should be part of the research process from the start. This is one of the things we learned through collaboration with patients, doctors, scientists and drug company representatives at our 2015 Research Summit.

How do you benefit from taking part in research?

You have an opportunity to:

  • Directly contribute to advancing the field of celiac disease
  • Improve your own disease management, including by getting medical care from physicians with celiac disease expertise.

What role does social media play in keeping me engaged?

Digital and social media may not immediately come to mind when you think about research, but they play an essential role in keeping you informed and engaged. Facebook, Twitter, Instagram, You Tube and more all provide quick and easy access to information, encourage engagement and help build an active, knowledgeable and accessible community. It’s one of the ways that you can always count on Beyond Celiac to share new information with you.

Having information about studies that might be taking place near where you live, or news about researchers looking for a variety of patients who can participate no matter where their location, allows you to join in the scientific work being done. Additionally, you can always stay up-to-date.  

How does this engagement and community building help advance celiac disease research?

Your input through social media is increasingly recognized by researchers as a valuable source of information, feedback and data that impacts consumer health. For example, celiac disease patients have anecdotally shared both in person and online that they often find little value in meeting regularly with their doctors to talk about management of their celiac disease.

Beyond Celiac wanted to formalize the collection of this data and gather facts so we developed and shared a survey in 2015 through social and digital media to ask how patients are using healthcare. We are now working with researchers from Vanderbilt University, Columbia University and Beth Israel Deaconess Medical Center to analyze the results of the survey.

We know that we need new treatment options beyond the gluten-free diet, but development of drugs is only a piece of the research picture. Patients who participate in studies contribute to a cascading body of knowledge about many aspects of celiac disease, some with broad and long-term implications.

What do the numbers look like?

Here’s a snapshot of some of the information we learned about our community’s use of the healthcare system through this recent survey. Of adults diagnosed five or more years ago, nearly 30% have not visited their physician in the last five years to discuss management of the disease.

This data is currently being analyzed and we are excited to share more of our findings with you in 2017.

What specific things can I learn by being an engaged patient?

You can share your experiences and learn from the experience of others. You might think you are alone in dealing with the challenges of celiac disease and the gluten-free diet and that no one else understands. But there is a larger community that totally gets what you are going through, and you can connect with it.

While important, that’s only one benefit of being engaged. Some celiac disease patients are still relying on information that they were given when they were first diagnosed, perhaps five, 10 or 20 years ago, particularly since follow-up practices often differ significantly among patients. Consequently, they aren’t aware of the inefficiencies of the gluten-free diet being revealed by science. You can keep up-to-date about important developments in diagnosis, disease management, drug development and more to decide how best to meet your healthcare needs. And you can learn about the types of research and ways to contribute, whether it’s through taking a survey, participating in a trial that does not involve taking a drug or one that does.

How can I stay informed and engaged?

Beyond Celiac developed its Research Opt-In to give you the most up-to-date and accurate medical and science news, including study findings, opportunities to take part in studies and more. You can sign up to receive alerts either every other week or once a month. The Opt-In is the most direct connection to the research world that you’ll find.

How can I share my thoughts with Beyond Celiac and the broader community?

Social media, including Facebook, Twitter and Instagram, and the Beyond Celiac website allow you to comment on stories, share your experiences and ask questions. We often reach out to you when we are looking for patients’ perspectives on a wide range of topics.

We both develop and share surveys that enable us to get more specific details and identify unmet needs, behaviors and attitudes related to celiac disease. These are very helpful. For example, nearly 3,000 of you responded in 10 days to the survey that’s allowing us to better understand your interactions with doctors. That’s the power of making the patient voice heard.

One of the beauties of social media conversations is that they are immediate. You can engage with others, ask questions and get responses almost as fast as you can hit “send” or “post.” Conducting research and analyzing and sharing the results can seem like a very slow process in comparison. The impact is not always immediately obvious. Fortunately, researchers from all backgrounds agree that by listening to your voice things are happening much more quickly.

Be a part of research. Sign up for the Research Opt-In here. It's fast and easy.

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