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Wednesday, June 29, 2016

The Clare Project and "What Matters Most?" to young people with advanced cancer

by Karen J. Wernli

In the summer of 2014, my sister-in-law, a new mother, died of cancer after 11 years with her disease. Although doctors gave her the best care they could, as a health researcher focused in cancer care, I wanted to do better for people like Clare. Then, at a scientific conference that fall, I learned that others had the same desire. Representatives from the National Cancer Institute were asking for studies to improve care for adolescents and young adults, including at the end of life. On the plane home, I started working with my research ideas. I realized that to know what young people with advanced-stage cancer need, want, and value, we need to ask them directly. That’s what the Clare Project is doing.

I was fortunate to get support from the Group Health Research Institute Development Fund for pilot work. My team and I started by interviewing a few young adults with end-stage cancer. I learned so much from them about their concerns and values. Now, my Clare Project team of Drs. Marlaine Gray and Evette Ludman and Tara Beatty and I are taking a new approach for the next phases of our work.

A personal approach for a personal project

Clinical studies usually recruit people through the health system, with waiting-room posters or physician referrals. Because our work asks intimate questions about end-of-life priorities, we wanted something more personal. Clare used social networking to keep in touch with friends and family, so we started a Facebook page and a blog to tell our story. These have been wonderful for connecting with people who support our research. But we’ve found an even better way to engage with patients.

Based on many helpful suggestions, we started looking into online communities for young people with cancer. Through social media like Twitter, patients and caregivers are meeting virtually for empathy, encouragement, and practical advice. These communities make patients feel less alone. They are places to learn and share about real issues such as how to handle treatment side effects. The people in these groups aren’t tech geniuses or first adopters. Many joined Twitter only when their health status spurred them to find others with the same illness. Connecting with people through these forums takes time and in the end, is highly efficient.

Marlaine, especially, has spent hours reading blogs, listening to podcasts, and following Facebook and Twitter feeds to learn the culture of online communities for young adults with cancer. This activity alone has been invaluable for our research by showing us the diversity of experiences, issues, and challenges that people are talking about. We’re still learning about blogging, posting, and tweeting, and we’re grateful to everyone who has allowed us into their conversations. By trying to be respectful members of these communities, we’ve been able to reach out directly, one-on-one, to potential study participants, to ask if we might talk with them. Everyone we’ve asked has said yes.

The future of patient-centered research

Our work is going in many new directions. We just received National Cancer Institute funding to understand nationwide trends in end-of-life care for adolescents and young adults. In the next phase of the Clare Project, we’re going to ask caregivers and health care professionals what questions people have about care and treatment and how our research can answer them.Please contact me and see @clareproject if you want to know more. My family is proud that Clare, who was a high school biology teacher, has a legacy in research.

I’m committed to having patients, caregivers, and health care providers help me formulate, conduct, and spread the word about my research. I’m convinced about using social media to do this. As an epidemiologist, I’ve changed the way I think about a study population. It can still be people connected geographically or by a health care system. But it can also be virtual: people meeting online to discuss their disease, how it is treated, and what they think about their treatment.

I’ve experienced how patients are willing to directly and honestly communicate their ideas to researchers using social media and how they are rewarded by participating. I think we should all realize that in the 21st century, this is the best way to connect with people affected by our work. Patients, caregivers, and providers are online, talking about the issues we’re studying. Shouldn’t we be listening?

Join us Wednesday, 9 eastern/6 central for #hpm chat to discuss palliative needs withing the Metastatic and Advanced Young Adult Cancer Community (#mayacc), We'll discuss effects on patients and caregivers, and how The Clare Project hopes to bring better understanding to the needs of those patients and caregivers.

Karen J. Wernli, PhD, is a Group Health Research Institute assistant investigator working with The Clare Project.

Originally posted at the Research Health Group Blog

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