9:00 - 9:40 amSunday, September 7
Plenary Hall
Communicating the experience of illness in the digital age: Reaching beyond the Keller/Adams controversy
Plenary Hall
Communicating the experience of illness in the digital age: Reaching beyond the Keller/Adams controversy

Faculty, Tufts University School of Medicine
ePatient Scholar; Community Manager, Mayo Clinic Social Media Health Network
Entrepreneur in Residence, Robert Wood Johnson Foundation
Manager Engagement and Social Innovation, ELLICSR, Princess Margaret Cancer Centre
The world of the well and the world of the ill are often separated by an abyss of understanding about what it means to live with chronic and/or terminal disease. This gap became especially evident earlier... Read more


The world of the well and the world of the ill are often separated by an abyss of understanding about what it means to live with chronic and/or terminal disease. This gap became especially evident earlier this year when Guardian columnist Emma Keller and then, her husband, former New York Times editor Bill Keller, wrote pieces questioning blogger Lisa Adams' disclosure and online commentary about living with metastatic breast cancer.

Pushback from the online ePatient community was swift, critical, and voluminous. Our proposed panel will focus on valuable opportunities that have emerged – discussing the evolving digital landscape of connection and isolation and the larger cultural issue of disclosing illness in the digital age, as well as practical realities of talking about wellness and illness via social media. We will examine the complex nature of online patient communities through the varied and expert perspectives of our panelists.

As associate director at the Pew Research Center’s Internet & American Life Project, Susannah Fox will provide a longitudinal view online patient communities have evolved from early adopters to a second generation of patient advocates. She will discuss the importance of gathering credible data that validate the relationship between online peer support and positive health benefits.

Meredith Gould, a sociologist, communications professional, longtime ePatient and experienced online community manager will discuss new expectations about disclosure that have emerged because of online engagement. A strong advocate for health literacy and participatory medicine, she will also explore the idea of establishing norms for online diplomacy to help bridge the gap between the world of the well and the ill. In 2013, Meredith received a Platinum Fellow designation from the Mayo Clinic Center for Social Media for her pioneering leadership in health care social media.

Colleen Young, Founder of Health Care Social Media Canada (#hcsmca), Community Manager of Canadian Virtual Hospice, and Manager of Social Innovation at ELLICSR, Princess Margaret Cancer Centre, UHN, will demonstrate how self-disclosure discussions deepen the sense of community in the digital world, and how these stronger ties enhance the health and well-being of the online community members and their community. She will discuss the pivotal role of the community manager in sustaining active online peer support.

Moderating our panel will be Pamela Ressler, a nurse researcher and faculty member in the Pain Research, Education and Policy program at Tufts University School of Medicine. She is co-author of Communicating the Experience of Chronic Pain and Illness through Blogging (JMIR 2012) and a contributor to WBUR Cognoscenti in Boston. Her article, Memo to Bill Keller: This is Why Patients Blog About Illness provides a framework for this presentation, which will include time for attendees to engage in dialogue with panelists. 


Pamela Katz Ressler, RN, MS, HN-BC is the founder of Stress Resources in Concord, MA, a firm specializing in strategies of resilience for individuals and organizations. Additionally, she is a faculty member in the Pain Research, Education, and Policy Program at Tufts University School of Medicine in Boston MA, a graduate program examining and studying the burden of pain in an integrative, multidisciplinary model. Pam's passions and academic research intersect in the area of using digital tools to build resilience through understanding the narrative of a patient's experience with chronic illness and pain. You can follow Pam on Twitter at @pamressler.

Dr. Meredith Gould's medical adventures began when she was seven years old. She is now 63, so that’s a lot of time logged in and around the world of healthcare. As a young woman, Dr. Gould spent countless hours in doctors’ offices and many thousands of unreimbursed dollars on testing and medication.  

During her late forties, Dr. Gould decided to shift her focus away from being chronically ill to helping others communicate clearly with healthcare professionals, manage hospitalizations, and die at home with optimal comfort.

Over the years, she has learned how and when to distinguish healing from curing. She is deeply committed to helping others embrace the former, especially when the latter isn’t an option.

Personal experiences plus rigorous training as a sociologist and as a marketing communications professional have shaped Dr. Gould's views about patient empowerment. She views the Medicine X e-Patient community as a safe, smart environment to discuss all this...and more.

Susannah Fox is a health and technology trendspotter and storyteller. Starting in September 2014, she will be the Entrepreneur in Residence at the Robert Wood Johnson Foundation. Prior to taking on this role, Susannah was an associate director at the Pew Research Center, tracking the social impact of the internet, particularly as it relates to health and health care. You can follow her on Twitter: @SusannahFox or on her blog: susannahfox.com 

Colleen Young is a community manager who listens, connects, informs and constantly learns. Using the online social networks, Colleen encourages people to add and tap into the collective knowledge of peer sharing. She has built several health communities, most notably Virtual Hospice.ca, a community for people facing end of life, death and bereavement, SharingStrength.ca, a community for women with breast cancer and Health Care Social Media Canada (#hcsmca), a community for all people interested in making health and health care more open and connected.

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