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Next #hcsmca chat

Wed. October 1, 2014 at 1pm ET (2pm AT, noon CT, 11am MT, 10am PT)
hcsmca = Health Care Social Media Canada more info >>

When social media streams go silent – #hpm & #hcsmca combined chat

September 23, 2014

By Colleen Young, Christian Sinclair and Naheed Dosani

hpm hcsmca join 2014 09 24Increasingly people are chronicling their experiences with life-limiting illness online. They help us understand a phase of life that many find hard to face, making a tough subject slightly less taboo. If fact only last week, Charlotte Kitley, a blogger with Huffington Post UK, posted a blog posthumously And So There Must Come an End. There are other examples, like Doug Gosling and his amazing writings in his blog Dying Digitally or Kate Granger (@GrangerKate), a palliative care doctor & terminally ill cancer patient musing about life and death.

Often through sharing online, people build communities and we get updates from people who are connected to them in person. But sometimes. there’s just silence. In our next Tweetchat we’ll bring together the Twitter communities of #hpm (hospice and palliative medicine/care) and #hcsmca (health care social media Canada) to discuss some of the issues that emerge from the generous contributions of these authors.

Some of the questions to be covered may include:

  • What happens when their social media channels go silent?
  • Are they truly gone? Are they just too ill to write?
  • Do the people close to them take over the communication?
  • How does a writer’s openness about their illness and mortality differ from classic illness support/update blogs?
  • What obligations are unexpectedly thrust upon them because of a growing audience?
  • What blogs/vlogs from people with a serious illness have influenced and/or inspired you?

Join us, with our host Dr. Naheed Dosani (@NaheedD), Wednesday night (September 24th) at 9p ET. We’ll be using the hashtags #hpm and #hcsmca and meeting new friends as we bring these two communities together.

What: #hpm/#hcsmca joint chat on Twitter
When: Wed 9/24/2014 – 6p PT / 9p ET
Host: Dr. Naheed Dosani

Facebook Event Listing:

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using or, for ease of following.

We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur
Cross-posted to Pallimed blog

Social Media: It’s getting crowded in here

September 15, 2014

Has Twitter gotten too darn noisy? How many blogs can you follow? Are you about to scream if someone invites you to Like yet another Facebook page or invites you to yet another social media platform to crowdsource, save health care, share your story?

Sometimes social media in health care just seems loud and crowded. This week on #hcsmca (September 17), I’d like to take stock and reflect on how you use social media. Before we dive into the topics, let’s spend more time on introductions (T1).

To introduce yourself, complete this statement:

I’m a __________________ and I use social media (sm) to ­­­­­­­­­­­­­_____________________.

For example, you might be

  • A researcher who uses sm to inform and recruit.
  • A patient who uses sm to connect with other patients.
  • An editor who uses sm to share journal’s publications.
  • A pharmacist using sm to stay up to date.
  • A communicator managing the institution’s sm presence.

We’re rarely one-dimensional as my examples imply, so you’ll have to be creative to fit it all into 140 characters.

Then let’s dive into these topics:

  • T2: Has your use of social media for health changed over time? If so, how?
  • T3: What does social media in health enable for you?
  • T4: What frustrates you or has disenfranchised you?
  • T5: What advice would you give someone who joining the hcsm bandwagon now?

Join the conversation Wednesday, September 17 at 1pm ET (10am PT, 11am MT, noon CT, 2pm AT).

Is it time for healthcare governance to get social?

September 8, 2014

This week on September 10, Jodi Butts will moderate #hcsmca, bringing a topic that we surprisingly have not examined from this angle. Remember, #hcsmca wants to hear from all voices. Does the question of governance intimidate you? No problem. Come and ask questions. No prior knowledge required. Got lots of thoughts on governance? Come share and help others learn. 

By Jodi Butts (@jodilhbutts)

headshot Jodi Butts

Jodi Butts

The name of Accreditation Canada’s report belies its conclusion: Quality Starts at the Top: The Pivotal Role of the Governing Body. Highlights of this study include two very important points:

  • The greatest opportunity for improvement related to governance is the need for governing bodies to regularly evaluate their own performance.
  • Organizations excelling in governance practices perform significantly better in aspects of patient safety, further emphasizing that boards play a pivotal role in enabling quality and safety.

Based on its review, Accreditation Canada found that while generally performing well, Boards are not regularly using a process to evaluate and benchmark their own performance and functioning. And yet, there is a large body of literature that reinforces the importance of governance and its influence on the quality of health care services.

Similarly, there is an abundance of evidence that supports the positive impact that transparency can have on quality. The authors of a 2011 McKinsey study entitled Transparency – the most powerful driver of health care improvement? note that transparency has already transformed a wide range of industries. They posit that, similarly in the healthcare context, transparency has the potential to enhance accountability, productivity and quality of service delivery; increase patients’ involvement in their own care and drive economic growth.

And if we are to pursue greater transparency, there has to be a better, or least an additional way, to access information about our healthcare system. From the individual’s perspective, freedom of information laws are expensive, limited and logistically clumsy at facilitating greater understanding of our system. From the providers’ perspective, they are expensive to comply with and offer an ineffective and distorted means of sharing knowledge. We continue to see more mandatory disclosure and reporting laws as a means of compensating for the shortcomings of “freedom of information” and “access to information” legislation but this probably isn’t the complete solution either.

It therefore seems to me that both governance and transparency are worth more effort than we are currently investing; that there is a need for “opening up” the governance process to more feedback and understanding; and some creativity never and probably wouldn’t hurt.

I’m therefore pleased to invite you to join me in Twitter conversation on Wednesday, September 10, 2014 at 1PM ET about the role social media can play in pursuing the improvement of the quality of healthcare governance and transparency in our system:

  • T1: How could social media be better than access to information laws at achieving transparency?
  • T2: How can social media be used in strategic or hospital design planning processes?
  • T3: Could live tweeting from Board of Directors or Medical Advisory Council meetings make for better governance?

Talking hospital food, local food and crowdsourcing with #hcsmca & @UHNTalkinTrash

August 29, 2014

This summer @UHNTalkinTrash entered the social media sphere to crowdsource ideas on getting more locally grown food for hospital in-patients at the University Health Network (UHN). Adeline Cohen will moderate #hcsmca this week to discuss the project and its creative use of social networking and crowdsourcing ideas.

By Adeline Cohen (@UHNTalkinTrash)

Adeline Cohen

Adeline Cohen

As the guest moderator of this week’s #hcsmca chat (September 3, 2014), I’m excited to bring the topic of food to the Wednesday chat. Our team at UHN Energy & Environment has started looking into the question of local food for patients in hospital. We have supported patient care through a sustainable environment since 1999 and are asking for the public’s input on until October 2nd, 2014.

The Greenbelt Fund has supported projects like ours since 2011, when they started placing a focus on the broader public sector. You may have heard of the work in Ontario of St Joseph Healthcare (Guelph), St Michael’s Hospital, and many more hospitals of the province have looked into local food procurement.

talkinfood intro

Digging into the organization of patient food at University Health Network (UHN) has raised some tough questions about the role of food, and specifically local food, in healthcare. We have searched through the wide net of University Health Network for expertise and initiatives related to food in hospitals. From the interviews of 30 stakeholders, we have identified 3 challenges that are currently being discussed by patients, healthcare professionals and the local food community on our public idea crowdsourcing platform: Talkin’ Local Food with UHN. logo UHN enviro 2008

The next step will be to pilot some of the ideas in the winter.

Getting input from #hcsmca

On Wednesday, September 3, 2014 at 1PM ET, we’re excited for the opportunity to discuss the successes and challenges of using social crowdsourcing, to hear your input and experiences, and to answer questions you may have. As well we’d like to ask the #hcsmca community some of the broader questions that emerged about food in hospitals from our crowdsourcing initiative. We propose the following topics:

  • T1: What are the most successful approaches to encourage people to join & engage in online crowdsourcing projects?
  • T2: Once ideas are gathered, what are the best ways to continue to engage and share progress of projects?
  • T3: Should doctors incorporate food recommendations for patients in hospital as part of treatment & recovery plans?
  • T4: Should we eat differently when we are sick? And what are your go-to foods when sick or injured?


#hcsmca chats about communicating the experience of illness in the digital age

August 4, 2014

MedX panelAt Stanford Medicine X in September, @PamRessler @SusannahFox @MeredithGould and I (@colleen_young) will lead a discussion about the power and pitfalls of people sharing their health experiences online: Communicating the experience of illness in the digital age.

Flipping the panel at #MedX

We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. See Susannah’s Storify, tracking the conversations, relevant articles and our blog posts. Pam kicked it off on her blog, followed by Susannah’s post and then my post on self-disclosure in online communities. Meredith will be publishing hers this week.

Many of you have commented on the blogs or tweeted us using the hashtag #MedXsm and we hope you’ll continue to do so.

August 6 #hcsmca chat

On Wednesday, August 6 at 1 pm Eastern Time (find your time zone), we will take the conversation to the #hcsmca community, asking these questions:

  • How do you decide whether to disclose your health status via social media?
  • What factors prevent you from disclosing your health status via social media?
  • How has social media changed your perception/definition of privacy?


I want my sex life back! TMI? Or gold for online communities and their managers?

July 30, 2014

By Colleen Young (@colleen_young)

“I want my sex life back! Before my breast cancer diagnosis, my husband and I used to…” posted by Susy (forum nickname)

Wait! Stop reading before this goes any further. It’s TMI (too much information). Or is it?

Not in my opinion as an online community builder. These types of conversations and the people who are willing to initiate them are priceless for online patient and caregiver communities. Susy’s entry into the community fabric was immediate. She shared openly. She revealed a lot about herself and her experiences and challenges managing a cancer diagnosis because she wanted and needed to talk about the stuff that she couldn’t talk about with her family, friends, and health care team.

In the lingo of community management, we call these self-disclosure conversations. Community managers hope for them; we look for them; we initiate them.[1] Most of all, we encourage them by making a safe space that welcomes open and honest discussions because we know that self-disclosure conversations create stronger connections and deepen the sense of community among the members.[2] As people reveal more about themselves, they connect with others and build trust.

You might think it a challenge to initiate and encourage self-disclosure in online patient and caregiver communities, but I have found it isn’t. People want to share their experience, find others like them to reduce not only their own isolation, but also to reach out to others who may be feeling alone. What takes time and effort is creating an active and welcoming community where people feel safe to disclose their innermost thoughts, opinions, emotions and personal information. Community managers know the importance of investing in the first members of a community to set the tone and establish a community’s “personality.” See more about the role of core members, especially at the inception phase of a community in this paper. I highly recommend reading Richard Millington’s practical guidance on The Art of Forging Strong Friendships Between Members of Your Community.

When members share personal experiences, they often find they are not alone. Susy’s message didn’t make the other members recoil in horror. It opened the floodgate. Turns out that other people wanted to talk about sex and cancer too. Common experiences were shared, connections and sense of community were strengthened, and activity increased – all ingredients of a successful community.

I want my sex life back!” was the catalyst that transitioned the burgeoning community for women with breast cancer from the inception phase to establishment phase and led to its success.[3]

I was green at community management when Susy gave me this gift back in 2007. Now I know that to establish a community, the founder needs to initiate self-disclosure conversations. If you allow and encourage such discussions, members will initiate self-disclosure conversations on their own, making the community stronger and more valuable.


This blog and my participation at Medicine X are dedicated to “Susy” and “Passirose”, who helped build SharingStrength| FortesEnsemble (which were adopted by | Cancer returned for both Susy and Passirose. They sought online community support again to talk about the tough stuff that life often saves until the end. I will always be grateful to both of them for helping establish Virtual Hospice’s online community.

Flipping the panel at #MedX

On Sunday, Sept. 7, 2014, 9 am at Stanford Medicine X,  @PamRessler @SusannahFox @MeredithGould and I will lead a discussion about the power and pitfalls of people sharing their health experiences online: Communicating the experience of illness in the digital age.  We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. You can check out our Storify, which lists our ongoing series of blog posts (this one is the third — Pam kicked it off on her blog, followed by Susannah’s post).


What do you think? How has someone’s self disclosure helped you manage your health or build community? Perhaps you’ve had a poor experience with self disclosure. I’d like to hear about those too. Join the discussion in the comments or on Twitter using the hashtag #medxsm. (If you prefer to send a private comment, email me at colleen [at] colleenyoung [dot] com.)

[1] Millington R. FeverBee. The Art of Forging Strong Friendships Between Members of Your Community
[2] McMillan DW, Chavis DM. Sense of community: A definition and theory. Journal of Community Psychology 1986;14:6-23.
[3] Young C. Community management that works: how to build and sustain a thriving online health community. J Med Internet Res 2013;15(6):e119

I #LoveTwitterCommunities

July 27, 2014

I #LoveTwitterCommunities.