Open Dialogue

The Power of Open Dialogue: A Conversation with Colleen Young

Back in October 2015, Colleen Young announced she’d be stepping away from one of Canada’s largest and most loved health care social media communities on Twitter: #hcsmca. After five years of innovative dialogue, debate and discussion, Colleen has learned a lot about Canada’s health enterprise. Before moving on to help build online communities for the prestigious Mayo Clinic in the States, Colleen met with Catalyst to share insights about the power of open dialogue, especially relative to health and health research.

Colleen Young was recently a panelist at Stanford University’s mould-breaking Medicine X conference, 2015
Colleen Young was recently a panelist at Stanford University’s mould-breaking Medicine X conference, 2015

Q1. What was your original vision for #hcsmca’s role in the health care system, and how has that changed during the past five years?

When I joined Twitter in 2009, Web 2.0 and social media were still very new to just about everyone in health care. I established the #hcsmca hashtag and started the weekly chat for people interested in exploring what the democratized social web could offer.

In the beginning, I just wanted to learn but as participation in the weekly chats grew exponentially, I formalized the vision. I could see how social media removed traditional barriers of communication in health care, how it was a valuable tool for bringing together people interested in improving the experience for patients as well as providers. My goal shifted to using online digital tools to help make health care more open and connected.

As #hcsmca grew and matured, and social media became practically ubiquitous, hosting a community focussed exclusively on social media no longer made sense. Last year the #hcsmca community revised its vision somewhat, to focus on social collaboration for better health and health care. As our community-drafted mission states, “#hcsmca connects people, facilitates communications, and supports innovative and collaborative solutions to improve health and health care. With the diverse knowledge pool of its members, the community leverages social media and other digital collaborative tools in an open forum to share perspectives, best practices, new ideas and solutions.”

Q2. The #hcsmca community has helped organizations like CAHO spread knowledge about research beyond the traditional enclaves of health research enterprise, most notably to involve patients. What results are you seeing and what more could be done?

Many of the patients and caregivers who participate in #hcsmca chats are recognized leaders in patient-engaged and patient-led research. They’re invested in seeing this practice grow and improve, and are articulate advocates for it.

My biggest concern is and remains the over-use and exploitation of actively engaged patients. I believe research institutes need to become more aware of situations that lead to burnout among patient experts. In addition to adopting meaningful compensation practices, institutes and funding agencies need to rethink and revise their processes for engaging patients in research, such as the number and types of forms they ask patients to complete, most notably the common CV, and the way they define credentials.

Sharing a laugh with fellow Stanford Medicine X panelists: Pam Ressler, Colleen Young, Susannah Fox and Meredith Gould. Photo credit: Gilles Frydman
Sharing a laugh with fellow Stanford Medicine X panelists: Pam Ressler, Colleen Young, Susannah Fox and Meredith Gould. Photo credit: Gilles Frydman

Q3. CAHO hospitals understand the value and need for partnership and collaboration with the many voices involved in the health research enterprise, from patients to educational institutions to governments. How do you feel #hcsmca has contributed to partnership and collaboration?

I’m hard-pressed to choose among the #hcsmca community’s many contribution—for example, from establishing a space where potential partners can meet and exchange ideas to providing a channel for knowledge dissemination—but a significant shift in the ways and means of communication tops the list. It has been so satisfying to see providers, policy makers, educators, researchers and knowledge translation specialists increasingly adopt plain English to communicate clearly and directly with public and patient audiences.

I’ve seen how researchers have become trusted members of the #hcsmca community by participating actively and openly. As a result, the #hcsmca hashtag has become an effective and efficient way to help frame research questions, evaluate collaborative tools, solve recruitment hurdles and disseminate research findings.

Similarly hospitals, physicians and other care providers have used #hcsmca as a powerful tool for “social listening.” In a relatively brief amount to time, #hcsmca has become a safe and trusted place to test new ideas. Participants know they have a community of people encouraging them to be innovative and to take risks; one that will applaud successes and help missteps become learning opportunities. Failure and learning from it has always been welcome among #hcsmca-ers.

Q4. How do you envision the role of social media platforms in the future of health care?

Social media platforms are ever-evolving. The art of conversation, especially listening, has been a mainstay of care in health since the beginning of time.

From my perspective as an online community developer and manager, the single-most transformative aspect of social media in health care has been patients. The social web has enabled patients and caregivers to connect with a wider network of other patients and caregivers more quickly than ever before. As my colleague Meredith Gould tweeted during a recent #hcsmca chat, patients connecting with patients helps “reduce isolation and cure terminal uniqueness.” There are countless patient and caregiver stories about how connectivity on the social web has helped them find a diagnosis, save lives, improve self-management of chronic illness, support caregiving, and even comfort in dying and grief.

By listening and participating on social media, health providers, creators of medical education, patient educators and researchers will improve healthcare experience for patients, their families and themselves.

Moving forward, I’m excited about re-imagining possibilities and opportunities of the social web for Mayo Clinic. My focus will be in the patient communities on Mayo Clinic Connect.

Capturing a caregiver’s story with Jenn Sprung. Photo credit: Jonathan Sprung
Capturing a caregiver’s story with Jenn Sprung. Photo credit: Jonathan Sprung

 

The #hcsmca community has been, and continues to be committed to rich conversation and idea sharing about ways to improve the many arms of Canada’s health system—including health research. The voices engaging with #hcsmca are among our top resources when it comes to the needs and nuances of patient-engagement in research. Colleen has cultivated that conversation, and CAHO hospitals hope to continue it as we develop a formal patient engagement strategy as part of our five year strategic plan towards a healthier, wealthier, smarter Ontario. We wish Colleen well in the next step of her social-media journey with Mayo Clinic.

NOTE: CAHO will be co-hosting a #hcsmca chat on January 13th, from 1 – 2pm ET as part of our Healthier, Wealthier, Smarter campaign (#onHWS). We encourage you to come and share your insights on why health research matters for patients, and why patients matter for health research.