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Next #hcsmca chat

Wed. March 4, 2015 at 1pm ET (2pm AT, noon CT, 11am MT, 10am PT)
hcsmca = Health Care Social Media Canada more info >>

Is Academic Research a Dead Man Walking?

February 28, 2015

On March 4, 2015, #hcsmca will be co-hosted by OpenLab (@UHNOpenLab), a design and innovation shop dedicated to finding creative solutions that transform the way health care is delivered and experienced, and the Teaching and Learning Institute at Holland Bloorview Kids Rehabilitation Hospital (@BloorviewPR). Moderators Shoshana Hahn-Goldberg (@HahnGoldberg), Post-Doctoral Fellow at OpenLab, Dr. Howard Abrams, Director at OpenLab and Dr. Kathryn Parker, Director Academic Affairs and Simulation Lead at Holland Bloorview wrote the following blog to set the stage for the discussion about innovative scholarship and alternatives to traditional peer-reviewed publications we hope to inspire on this week’s #hcsmca chat.

By Shoshana Hahn-Goldberg, Dr. Howard Abrams, and Dr. Kathryn Parker

headshot Shoshana Hahn-Goldberg

Shoshana Hahn-Goldberg

headshot Dr. Howard Abrams

Howard Abrams

headshot Dr. Kathryn Parker

Kathryn Parker

An #hcsmca discussion about innovative scholarship and alternatives to traditional peer-reviewed publications

There is a revolution occurring in healthcare. This is partly being driven by need (demographics of an aging, increasingly educated population) and opportunity (distributed health information technology and very rapid innovation cycles).

Is traditional academic research and its currency of peer reviewed publications still the right model to test and disseminate innovative models of care?  Especially in complex interventions where the scientific method of holding all things constant except the intervention is unrealistic in the messy real world, negates the active learning and innovation cycle inherent in the innovation process, and risks concluding that no effect means “not necessary” rather than “necessary but not sufficient”.

So there are two separate but related issues that arise from this;

  1. Is there another model of “proof of concept” that we should recognize or develop in order to assess the validity of the rapid innovation in health care that is necessary, and is in fact occurring among free-living human beings?
  2. Is there an alternate form of peer review that is better suited to the new requirement for rapid assessment and dissemination of new models of care, or has this academic model already died and just doesn’t know it yet?

Traditionally, research papers undergo peer review before publication, which generally takes about eighteen months to go from submission to publication1, and this estimate does not include the time it takes to prepare a manuscript or that a manuscript may need to be submitted to several journals before it is accepted. The result is that research disseminated through peer-reviewed journals is often several years old. One could argue that the peer-review process is slow, stifles innovation, and lacks transparency2. One could also argue that the peer-review path is not the best way to get the information to all the desired audiences and there are certain types of research where peer review is not necessary. In these cases, there are potentially many other ways to disseminate the research, such as through various forms of media.

There are two main roles of scholarly journals and peer review:

  1. An archive of validated research in a field – Most people would agree that getting it right, through the care and effort of peer review, outweighs the need for rapid publication when viewing these journals as our archive of knowledge1.
  2. Communicating research among others in the field – Speed and interactivity are much more important for this role. Peer review may be less important, as experts in a field can make their own decisions about validity1.

Two trends, open access and social media, have the potential to change the peer review process2. Some new models of peer review are developing, such as comment crowdsourcing, where anonymous peer review is replaced with public reviews that can include the reviewer’s reputation (as determined by peers) to weight the review score. Open publishing platforms such as PeerJ and the Journal of Participatory Medicine employ concepts such as invited moderation, post-publication comment, post-publication measures of quality and impact, and community-based review2.

abstract representation of innovative scholarship

Another publishing route is through preprint sites based on the arXiv model. Information is disseminated rapidly, but papers submitted are not subject to traditional peer review. Mendeley, with over 34 million research papers, also incorporates an academic social network. PaperCritic, which works in tandem with Mendeley, allows scientists to review each other’s work2.

These innovative systems have potential; however, although many have already been around for several years, they are not as widely used as we would expect. With the innovation cycle increasingly rapid, the traditional approach of academic research and publication may not meet the needs of current challenges. Will there always be a place for it?

Discussion Topics:

In a world where increasingly more people are actively participating to improve their health, often collectively, open access methods will be required to disseminate research results.

  • T1: What role(s) do social networks play in peer-review, when more people now participate in improving their health?
  • T2: What can replace traditional peer-review and provide credit when dependent on academic structures for support?
  • T3: When is peer-review not desirable? For which audiences? For which projects? What are better options?
  • T4: How does knowledge created through non-traditional research get shared? What is “peer review” within this context?
  • T5: What are risks to abandoning peer review? Should e-patients be made aware of peer review versus social media review?

References:

  1. Solomon DJ (2007). The role of peer review for scholarly journals in the information age. The journal of electronic publishing 10(1).
  2. Pickard KT (2012). The impact of open access and social media on scientific research. The journal of participatory medicine 4.

There’s so much more to say: The #hccmty convo continues

February 26, 2015

By all accounts #hccmty an amazing event. Over 120 people showed up to network at the blockbuster meetup hosted by #hcsmca, Evening Rounds and #hcldr. The room was buzzing. The #hccmty hashtag was trending. Read the Storify of the tweets.

Panelists and audience members alike contributed to the shared knowledge about online communities. But even after 75 minutes, there was still so much more to say, to ask, to talk about.

picture of the #hccmty panelists on stage

Luckily the on-stage event February 25 was but one link in the chain, not the beginning nor the end. The pre-event blog posts got us started and here we can continue the conversation.

Let’s discuss it now. Here.

Was there anything you wanted to ask the panelists Robyn Sussel, Colin HungBlair Ryan, Colleen Young or the moderator Kathy Kastner?

What did you learn? What was your favorite part? What do you want to add to the discussion?

#hccmty Event – Program & Livestream Details – Wed Feb 25th, 2015

February 24, 2015

For the first time, community participants of Health Care Social Media Canada (#hcsmca), Health Care Leadership (#hcldr) and Evening Rounds (#erounds) will gather in Toronto for a combined, powerhouse Meetup! Introducing #hccmty.

Program

  • 6:00 Mix, mingle and post a selfie with someone new you just met
  • 6:30 Rapid fire updates from #hcldr, #eRounds, #hcsmca
  • 6:45 Break: Food and refill your drink
  • 7:00 Panel begins*

*Times are in Eastern Time. Check your local time. Panel start may be delayed by 5-10 minutes if we’re just having too much fun.

If you can’t join us in person, watch the livestream and join the convo using the hashtag #hccmty.

Panelists Colleen Young (#hcsmca), Colin Hung (#hcldr), Robyn Sussel (Signals.ca) and Blair Ryan (TheRounds) led by moderator Kathy Kastner (BestEndings) will explore with attendees why online communities in health matter.

Roundup of the #hccmty blogs

Don’t miss the pre-event conversation. Read these blogs and the conversations in the comments.

“Is anyone there?” – Is your online community a ghost town?

February 22, 2015

This is the last post of 4 in preparation of the #hccmty flipped panel by Colleen Young, Community Strategist.

All 4 panelists will be presenting their ideas and sparking conversations on this blog so that the on-stage event at the February 25 #hccmty meetup will be but one more link in the chain, not the start or end point. Read the first blog by Colin Hung, the second blog by Blair Ryan and the third by Robyn Sussel

By Colleen Young (@colleen_young)

“Well it’s discouraging to find that after three months and 126 views of my post, not a single person made the effort to write a single supportive word.” ~ posted by patient community member

Headshot Colleen YoungWhat a heart wrenching post to see on an online patient forum. Nothing spells the demise of a community more clearly than unanswered posts and lack of activity. If you want to build a thriving community, focus on the people, help them connect and get them talking. To be successful, a community needs activity.

Forget about producing content.[1]
Instead, foster connections between members and stimulate conversations.

People seek community online to connect with other people. They want to learn from other people like them, put the information into context of the experience, share what they know and have discovered, ask questions, find support, collaborate and problem-solve.

Information seekers scour the web. Lurkers read community posts. But when someone actually posts to an online community, then they want to talk. They want to connect. So the community manager’s job, especially in the inception and establishment phases of the community life cyle[2] , is to

  • Make sure posts get a response
  • Introduce people, especially first-time posters, to other members
  • Direct people to relevant activity, to people talking about the topics they are interested in

A lot of this work the community manager does behind the scenes. We build relationships with core members [3], who help respond to new members, generate conversations and model community etiquette and behaviour. For patient and caregiver communities, this means making a safe space that welcomes open and frank discussions.

Read more about how self-disclosure conversations create stronger connections and deepen the sense of community among the members in the post I want my sex life back! TMI? Or gold for online communities and their managers?

Forget about a huge launch.[4]
A big launch may attract a lot of eyes to your online community. A bunch of people may even register. But if no one posts, all you have is a dead settlement – a gathering of people, akin to mayflies, who live but a day or two, and then they are gone forever.

The Mayfly metaphor was an a-ha moment during the flipped panel at Stanford Medicine X 2014. Watch from 23:03 to 26:15.

As Richard Millington says in his article 7 Things a Successful Online Community CAN Live Without, “The only element a community can’t survive without is activity. No activity, no community.

Flipping the #hccmty panel

Let’s get the conversation started before the #hccmty meetup on February 25.

How have you successfully generated activity on your community? What challenges have you had? I’d like to hear about those too. Add your thoughts in the blog comments or on Twitter using the hashtag #hccmty.

References
[1] Millington R. Information Needs and Why Content-Driven Community Strategies Are Flawed. Feverbee. Oct 2011 http://www.feverbee.com/2011/10/content.html
 [2] Iriberri A, Leroy G. A life-cycle perspective on online community success. ACM Comput. Surv 2009 Feb 2009;41(2):1-29.
 [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 http://www.jmir.org/2013/6/e119/
 [4] Millington R. Big Launch Syndrome. Feverbee. Sep 2011 http://www.feverbee.com/2011/09/big-launch-syndrome.html

Don’t Knock the Nudge: Moving from online community engagement to real-life behaviour change in health

February 18, 2015

This is the third post of 4 in preparation of the #hccmty flipped panel by Robyn Sussel, Principal and Chief Strategist at Signals.ca.

All 4 panelists will be presenting their ideas and sparking conversations on this blog so that the on-stage event at the February 25 #hccmty meetup will be but one more link in the chain, not the start or end point. Read the first blog by Colin Hung and the second blog by Blair Ryan.

For more information on the #hccmty event.

Eventbrite - #hccmty Meetup - Building Online Health Communities

By Robyn Sussel (@signalsca, @robynsussel)

headshot Robyn SusselWe all know that when it comes to human beings and behaviour change, offering the carrot not the stick usually elicits a better response. Think about weight loss advice from your doctor. “I think you should eat more fruits and vegetables.” Okay, yeah I can do that.  Versus,  “You need to lose weight so eat less!” Uh….not so much.

Nudging us towards better behaviour is clearly a better option.

Richard H. Thaler and Cass R. Sunstein introduced “nudging” in their 2008 book, Nudge: Improving Decisions About Health, Wealth, and Happiness. Their theory was that it is helpful to “hide” behaviour change in positive experiences.

A good analog example of “nudging” is this Stockholm staircase that was made into a set of piano keys. When given the choice between an escalator or a fun staircase, the healthier option wins out. People were not informed, preached at or even reminded of the benefits of taking the stairs. The nudge was just a better experience and they changed their behaviour without admonishing or shaming.

Much like the piano in Stockholm, online technologies offer health providers a chance to engage with people in ways that elicit action. We also know that all digital audiences are seeking better and meaningful experiences online. In my day-to-day work, creating these experiences is especially important for our health and human rights clients who aren’t seeking a “business” endpoint, like a financial transaction. But rather they are looking to educate and hopefully prompt behaviour change to improve health — which is often the hardest sell of them all. (I’ve written more about online nudging techniques on the Signals blog).

Having created many digital campaigns that promote behaviour change, I can tell you that online communities are often central to creating this offline change. But like Colin Hung said in his blog post from last weekend, creating an online community may not be the necessary goal. A good place to start is to really understand the behaviour of your audience (as well as their attitudes towards the subject matter) and also understand what communities currently exist that could potentially access these audiences.

For example, we created a campaign to encourage young women (age 19-21) to take a healthy action — to go to their pharmacy for their HPV shot. This was a campaign that sought to interact with a group of people who already interacted in many online spaces. So our strategy was to reach them where they already spent time. We also put the “sharing” experience in their hands so they could share their action with their peers in the communities where they were actively established. This encouraged peer-to-peer prompts for behaviour change — the “nudge” from their friends (not public health officials) to get the vaccine.

But there are cases where the right online community does not exist, despite evidence that the target audience is active online. We ran across this when we created the Power to Push campaign which was targeting women in BC of reproductive age.

Due to unacceptably high rates of c-section in BC (and climbing), the goal of the campaign was to educate women who had already experienced one c-section, that they didn’t necessarily need another one. More than that, the action we wanted them to take was to call and visit the BC Women’s Hospital clinic where offline interventions could take place.

At the time, there was no online community for pregnant women in British Columbia, so our strategy was to create one and “work in” the Power to Push message.  The “nudge” in this case was to provide women with an online support group that they lacked. Okay, contrary to nudging principles, we preached a bit, but it was mainly the community itself encouraging one another to consider alternatives to c-section.

The work involved in creating that community was huge (as my co-panelists have said) so this should not be taken lightly. But an economic case can be made — in this case our two year campaign was a drop in bucket compared to the savings to the healthcare system to avoid thousands of unnecessary surgical interventions. (Metrics for the campaign were presented at the first ever Evening Rounds in Vancouver back in 2012). Within a year it was (and still is) the largest online community for pregnant women in BC.

So here are some things to think about?

  • How could “nudging” help your organization bridge the gap from just offering information to patients/public to eliciting a healthy action?
  • How could “nudging” contribute to the sustainability of an online community?
  • How could “nudging” techniques be used to transition online community connections to in-person connections?
  • If you’re trying to make a health-related intervention, how can you best convince management that online discussion and to support to offline behaviour change is worth the investment (building a case)?

Panelists posts

Five key components to building an online community for physicians

February 17, 2015

This is the second post of 4 in preparation of the #hccmty flipped panel by Blair Ryan, CEO of The Rounds, Canada’s fastest growing, secure, online network, exclusively for physicians.

All 4 panelists will be presenting their ideas and sparking conversations on this blog so that the on-stage event at the February 25 #hccmty meetup will be but one more link in the chain, not the start or end point. Read the first blog by Colin Hung.

For more information on the #hccmty event.

Eventbrite - #hccmty Meetup - Building Online Health Communities

By Blair Ryan (@TheRounds@BlairJRyan)

Headshot Blair Ryan“How is The Rounds different from other physician communities?” is a question we at The Rounds are asked quite frequently. In other words, what have we done differently that has contributed to our success?

There are multiple ways to answer those questions. For instance, nothing at The Rounds has come without hard work and dedication, nor has it come without vision and belief in the fundamental need for a place for physicians to gather in a secure and engaged network. First, it is important to explain how we at The Rounds consider and define ‘community’.

A community is a place where people who share common interests, values and intentions gather to engage and support with each other in relation to those common interests and goals.

When it comes to The Rounds, this means we’ve created a place, (an environment, if you will) where physicians interact in meaningful ways to bring about significant and meaningful outcomes, especially in terms of patient care.

With this in mind, when it comes to the concept of ‘community building’, we’ve boiled it down to five key factors that contribute to our success.

Relinquishing control & listening

The difference between The Rounds and many other – if not most – online communities is that it is self-moderated by our physician members. That is, we relinquish control of the flow of information and the the comments and replies which, in turn, facilitates more realistic dialogue. This also creates a greater sense of ownership and power for physicians and therefore reinforces the concept of community.

To put this into context, let’s compare the interactions on The Rounds to the interactions on the comments section of a major news publication. On a newspaper site, commenters are all invested in the same news story, but do not share the common goal of supporting or connecting with each other. On The Rounds, commenters are replying to posts created by fellow physicians with the implicit desire to assist, augment and grow the collective knowledge base.

Concurrent to the need to relinquish control over the flow of information within the site, is the requirement that The Rounds listen to the needs of members. By listening, we are better able to build a product that eases the flow of information. In fact, we just rolled out a new version of the site that is entirely based on user feedback.

Creating trust and having trust

We can all relate to the fear of surrendering control of something to someone else. The uncertainty of the outcome can be frightening. But, in order for a true community to exist in an environment like The Rounds, there must be trust. We must trust that our physician members have their own best interests at heart and we must continuously remind our members that they can trust us to maintain that environment for them.

This is why we allow full-fledged discourse on The Rounds on any topic that is posted – from patient specific cases to clinical challenges, issues of ethical concern to running a private practice and beyond. Furthermore, we always remind members that The Rounds is entirely HIPAA and PIPEDA compliant – meaning the network is a trusted and secure place where they can always feel at ease to share opinions, comments and so on.

Facilitate value

The Rounds logoWhile we make every effort to relinquish control and allow members to self-moderate, The Rounds also seeks to reinforce the inherent value of the network by way of reminders and suggestions. Sometimes it’s hard to see the forest for the trees, so every once in a while, we’ll send a note to those within the network suggesting that they connect with a certain physician or consider a certain post that may have been overlooked. This approach still permits us to be ‘hands off’ the information, but helps to bring awareness to the overall value contained within The Rounds.

Private & secure

It almost goes without saying that, for The Rounds, having a private and secure place to establish community is paramount. Physicians are saddled daily by concerns of doctor-patient confidentiality, HIPAA and PIPEDA legislation, ethical questions surrounding use of traditional social media channels and so on. The Rounds is successful at community building because we help physician overcome all of those challenges are more.

Free

Here’s the big one. The ultimate. Arguably the most important and immutable essence of The Rounds. It is free for physicians to join. We have studies showing physicians would be willing to pay to be part of The Rounds. So why is it free, you ask? Because keeping our network free for physicians is what allows us to focus on the other four components of community building (relinquishing control, privacy & security, value and trust-building). Physicians spend years increasing their knowledge and experience, often spending hundreds of thousands of dollars to do so. We do not want to add to that burden in anyway at all, even if it’s by implicitly requiring a physician to make a choice to spend money on this community. We have a safe, secure, valuable community that is full of knowledge and potential to increase patient outcomes – making that community free to join is crucial to success.

This post is just grazing the surface of what it means to build a physician community online. We hope that you consider the talking points presented here and bring your questions, knowledge and ideas to the #hccmty Meetup on Feb 25, 2015!

Let’s get the conversation started here:

  • Do you think online communities can be self-moderating?
  • What do you think are the key components to success when building a thriving online community?

Panelist posts

Rare Disease Day – Making connections online & offline

February 15, 2015

February 18, 2015 at 1pm ET (10am PT), Isabel Jordan moderates #hcsmca in celebration of International Rare Disease Day. 

By Isabel Jordan (@seastarbatita)

headshot Isabel Jordan

Isabel Jordan

February 28th marks International Rare Disease Day – a day to bring awareness both within and outside the rare disease community. Several years ago some very smart people realized that while individual rare disease communities may be small, collectively the rare disease community is actually very large. Up to 1 in 12 people will have a rare disease in their lifetime and the people facing a rare disease shares a common journey with common obstacles. Rare Disease Day is a way of igniting the rare disease community to work together and achieve common goals as well as to increase the strength of our voice to those who wield power and make decisions.

The theme of this year’s Rare Disease Day Day-by-day, Hand-in-hand started me thinking about how the community I’ve found in both the offline and online world has influenced my lived experienced as a parent of a child with a rare disease ― the parents, people living with rare disease, those working in health care and volunteers I’ve met through the Rare Disease Foundation. My son, at 13 is still undiagnosed and when we started on his diagnostic journey as a preschooler we had no peers to turn to for answers, advice or guidance. Creating our own rare disease community let me share and find common goals, strategies and a voice for advocacy that gave meaning to our family’s struggles. Finding a greater community of health care providers and other volunteers willing to give their support has given me hope that our health care and research needs can be realized.

Isabel and her children

Isabel and her children

Eventually my personal rare disease journey crossed into my world of social media as more than just a place to share my kids’ photos and latest lunch ideas. My network started to grow nationally and internationally, giving me access to new perspectives and ideas. My social media rare disease community was becoming as important to me as my “meatspace” (in person) rare disease community, but in a different way. I started to become interested in how my online and offline communities could join and interact with one another.

How have my online networks changed my lived experience with rare disease? As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey. I look for researchers, doctors, other connected parents to see what they are posting. Could what they are saying have relevance to our journey? To my son’s care? Can their strategies transpose to ours? We hear stories where this happens, where communities crowdsource one another. Could it happen to us?

My own story echoes this because it was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas.

The rare disease community depends on social media. We are individually spread thin with 1 in 10,000 here and 1 in 100,000 there and the undiagnosed all over. But together, well, together we can talk. We can connect. We can crowdsource ideas, and strategies and connections. But I think we can start doing it better. The question is:  How?

  • T1: What opportunities have social media afforded rare disease communities in particular?
  • T2a: What’s better in online rare disease communities than our geographically closer communities?
  • T2b: What are the shortcomings of online rare disease communities compared to IRL connections?
  • T3: Can the offline world of rare disease communities benefit from social media connections? How?
  • T4: How can the online and offline rare disease communities work better together?