10 Tips for Unconference Facilitators

Developed with Pam Ressler (@pamressler)

1. Give a brief outline with the purpose and timeline of the session.
2. State ground rules, establishing your role as facilitator and that you may need to redirect the conversation to keep the session on target.
3. Frame the topic both verbally and visually in design mode thinking: “How might we…?”
4. Don’t try to be both facilitator and scribe. Elect a note taker.
5. Gently but firmly acknowledge the opinion of people who tend to dominate and then ask others to weigh in.
6. Directly invite quieter members of the group to share their thoughts. Ask an open-ended question.
7. Leave enough time for wrap up.
8. Invite the group to identify key takeaways.
9. Summarize the group learning and identify key themes, ideas, action items.
10. Have fun!

Also see this #hcsmca Symposium – Facilitator Quick Reference (PDF), adapted from unconference wisdom shared with me by Marlies van Dijk, RN, MSc. Thank you Marlies.

Read more about #hcsmca’s Symposium

• How to Unconference #hcsmca Style
• How to Prepare for the Unconference Part of the #hcsmca Symposium
• The #hcsmca Symposium Program

 

Additional resources for Facilitators:

• http://www.dbsalliance.org/pdfs/facilitatorguide.pdf
• http://www.oucom.ohiou.edu/fd/Facilitating%20Small%20Group%20Learning.htm
• http://med.fsu.edu/index.cfm?page=facultydevelopment.smallgroup

#hcsmca: The Not so Hidden Agenda

By Pat Rich (@pat_health)

“Let’s make sure something tangible comes out of this.”

This has been the mantra for the organizers of the upcoming #hcsmca Symposium since the very start of the planning process.

Throughout its long and illustrious (for social media) history, the #hcsmca community has always been a cosmopolitan and welcoming place for anyone interested in health care issues and social media to participate and exchange ideas, learn and debate. Through the weekly tweetchats (252) and occasional meetups (9) a huge number of topics, both topical and more philosophical have been brought into the light and talked about to the benefit of all.

But there has always been an underlying sense – voiced most recently during the strategic renewal process of #hcsmca – that more could and should be done to ensure all of this community-building leads to initiatives that make a difference in how people provide and experience health care in Canada.

So when work began on planning next week’s #hcsmca Symposium in Vancouver one of the core concepts was that the symposium should not just be a IRL version of a well-attended tweetchat but also a fulcrum for using the crowd-sourced power of the #hcsmca community to produce lasting legacies.

This is why you have seen much effort over the last several weeks to generate ideas that will be discussed in an unconference format during the symposium and produce tangible products, tactics and messaging that will actually be used when the meeting is over.

In the true #hcsmca community spirit, the scope of the general concepts to be discussed was set in an earlier tweetchat which is why you see digital health and patient/provider engagement being represented so prominently in the challenges that will be tackled at the meeting.

And while for logistical reasons those who are bringing the challenges forward must be present at the symposium, we are ensuring the #hcsmca community as a whole has an opportunity to weigh in on them first (Vote for your favorite #hcsmca Symposium Challenges).

#Hcsmca will be transformed following the Vancouver symposium as volunteer Founder Colleen Young moves on to delegate the majority of her time to other activities.

To quote one of my favourite singers when it comes to this particular phase of the history of #hcsmca –

And I want to know
The same thing
Everyone wants to know
How’s it going to end?    ~Tom Waits

As organizers of the meeting, we can assure this particular symposium will end, not just with the sense of a day well spent with colleagues and new friends, but with a determined approach to provide real solutions to real problems.

Robyn Sussel (@robynsussel) will moderate this week’s #hcsmca on Wednesday, February 17 at 1pm ET (time zone converter) to explore these important questions.

Q’s regarding upcoming symposium in Vancouver

• T1. What do you need to know about an unconference format in order to actively participate either in person or remotely?
• T2. If you can’t be at the Symposium, how would you like to virtually interact with those in Vancouver before, during and after?
• T3. Do you agree that conferences MUST have a definable outcome to be deemed a success?

Q’s about the future of #hcsmca and our community

• T4. Do all online communities naturally come to an end? Should they?
• T5. Without a weekly chat, how can the #hcsmca community across Canada stay connected?
• T6. Is there a group in Canada emerging as the obvious home of health care and social media learning (e.g. Mayo Clinic in US)

Have you registered for the symposium? Only a few seats left.

Vote for your favorite #hcsmca Symposium Challenges

Sixteen Challenges made the first cut. Which 12 should we problem-solve at the National #hcsmca Symposium on Feb. 24? Vote for your favorite challenges. Add comments and tells us what you like or what improvements could be made to any of the challenges. Be sure to label which challenge you’re referring to by mentioning its number and title.

Here are the challenge finalists. Jump to read more or simply scroll through all 16.

• Challenge #1: Reaching for Impact
• Challenge #2: Healthcare Communication Scorecard
• Challenge #3: Bringing parents’ parenting expertise into pediatric practice online?
• Challenge #4: Are we ensuring privacy at the risk of providing good clinical care?
• Challenge #5: How will #hcsmca documented, remembered and archived? 
• Challenge #6: More Isn’t Always Better: Engage the Public in the Choosing Wisely
• Challenge #7: Using social media to advocate for policy change
• Challenge #8: Get Out, Get Active with PCNs (GOGA)
• Challenge #9: Getting more Canadian health care providers to use social media
• Challenge #10: Reaching and engaging busy clinicians and physicians in particular
• Challenge #11: Listen effectively merged
• Challenge #12: Patient Engagement Network 
• Challenge #x: Role do consumer health applications in our health care system
• Challenge #x: Citizen Journalists and Social Media merged with 11
• Challenge #x: Getting Communities on the Bus! withdrawn
• Challenge #x: Engaging staff members in Social Media merged with 9

Challenge #1:

Reaching for Impact

Submitted by: @DrCChambers, @JCollinsLam with @hwitteman & Gayle Scarrow

 The analytic output from social media is impressive especially for health researchers and healthcare organizations including funders…but is there evidence that reaching people over social media can improve health? That is, can we measure changes in people’s attitudes, practices and/or informed policy decisions based on the evidence being disseminated? A social media campaign by researchers to impact children’s pain management and KT activities facilitated by a health research funder will be used to examine this question from two different contexts.

Symposium goal: Produce a list of relevant, feasible, readily gathered indicators related to IMPACT (rather than outputs and outcomes) and a way to collect them for use by healthcare-related organizations and researchers.

Dalhousie University/IWK Health Centre & Michael Smith Foundation for Health Research

 

Challenge #2:

Healthcare Communication Scorecard

Submitted by: @colin_hung

A key ingredient in a positive patient experience is communication. Yet there is no consistent and empirical way to measure how well healthcare organization communicates with its patients. Without a standardized metric there is little incentive for improvement. What ideas do you have to track an organization’s effectiveness over phone, text and email as well as through new channels like social media? Let’s create a communication scorecard together.

Symposium goal: A scorecard and accompanying set of metrics to determine how effective a healthcare organization is at communicating with patients – using traditional as well as new channels like social media.

Stericycle

 

Challenge #3:

How might we bring parents’ parenting expertise into our pediatric and teen practice … online?

Submitted by: @drpauldempsey
At least 100 families gather weekly at @QuintePediatric (QPAM). In our waiting room & hallways, we see parents connecting & exchanging health & parenting experiences. We’ve also collected expertise from caregivers through our online sm platforms. Analytics indicate the most engaging topics for which we create & share relevant content We want to encourage our QPAM community to expand the depth & reach of their expertise, with relevant supportive resources, into a meaningful online environment.

Symposium goal: Our challenge is to develop a ready-to-go toolbox to encourage sharing of the in-the-trenches expertise of our parents with each other. How can we unleash and encourage sharing of the expertise among us as parents, caregivers, family and friends?

Quinte Pediatrics and Adolescent Medicine

 

Challenge #4:

Are we ensuring privacy at the risk of providing good clinical care?

Submitted by: @CHS_SFU Scott Lear

Ensuring patient privacy is a crucial consideration when providing care. The privacy lens has been more focused on the use of ubiquitous technologies than ever in the past. Is there a downside to this? Does this limit the provision of optimal care and the conduct of research that leads to ground-breaking care solutions? Have the end-user voices been heard in this discussion? These questions will be discussed in a candid manner in which we learn from others’ experiences.

Symposium goal: To identify a set of guiding principles to ensure that we can provide timely and optimal care while respect user privacy.

Simon Fraser University, Community Health Solutions

Challenge #5:

How will #hcsmca documented, remembered and archived?

Submitted by: @colleen_young

Without a doubt #hcsmca has had tremendous impact on health care communications in Canada and beyond. Over the past 5 and half years we’ve held more than 250 chats hosted by 80 moderators with more than 19,000 members. There have been 9 formal in person meetups as well as several impromptu meetups across the country. Out of these countless connections have been made. Projects, plans, emerging practices and friendships have been built as a result. How will #hcsmca’s impact be documented? What can we archive? What can we measure? How will it be remembered?

Symposium goal: Develop a list of the various ways #hcsmca’s outputs and impact can be documented, remembered and archived? Create a plan to make it happen.

Challenge #6:

More Isn’t Always Better: How to Engage the Public in the Choosing Wisely Canada Campaign

Submitted by: @bornk

30% of health care is unnecessary. CWC is a campaign to raise awareness about this and has gained traction amongst physicians. However, raising public awareness is crucial to drive changes to physician practice, patient behavior and public expectations. CWC has patient education materials and a new website that share campaign content in plain language – how can we leverage online conversations and information seeking about health to promote the message that ‘More is Not Always Better’?

Symposium goal: Strategies to shift public conversations online about health towards more is not always better.A concrete plan for how and where to insert this counterintuitive message into conversations about health online to shift attitudes and change behavior.

Choosing Wisely Canada

Challenge #7:

Using social media to advocate for policy change

Submitted by: @DebMaskensKCC @CanCertainty

Patient advocates use social media for a variety of purposes. One core purpose is to advocate for health policy change. How can we use social media to increase our reach and engagement with key constituencies? (The public, patients, decision-makers, influencers?) What is the measure of a good advocacy campaign on social media? The campaign I would describe is the @CanCertainty Campaign that I have been co-leading for 2 years. Social media has been keen for awareness, but results?

Symposium goal: To identify a set of strategies and tactics that reach key influencers and result in health policy change. Secondly, to develop metrics that help to determine the ongoing effectiveness of an advocacy campaign conducted using social media.

CanCertainty Campaign

Challenge #8:

Get Out, Get Active with PCNs (GOGA)

Submitted by: @TamaraVineberg and @GOGAwithPCNs

Approximately 3.2 million deaths each year are attributable to insufficient physical activity. Primary Care Networks in the Edmonton-area have organized Get Out, Get Active (GOGA), a six-week physical activity challenge, and are looking to increase participation and engagement among physicians, patients and the general public. How can social media make this physical activity challenge stand out from the other fitness challenges? How can social media increase the awareness of GOGA, make this program unique and keep participants motivated to complete the challenge?

Symposium goal: The goal would be to develop a social media strategy for GOGA and to explore how to measure the reach and impact of the social media campaign.

Get Out, Get Active with Primary Care Networks

Challenge #9:

Getting more Canadian health care providers to use social media professionally

Submitted by: @pat_health

Use of social media to improve health care delivery and the patient experience remains marginal in Canada. Strategies are needed to increase number of providers using social media professionally.

Symposium goal: A set of tactics to improve health care provider social media usage

 

Challenge #10:

Reaching and engaging busy clinicians and physicians in particular

Submitted by: @margot_white

Today’s clinicians are busier than ever, yet technology offers us more options to connect. What digital strategies and tactics have participants found to be most successful in reaching and engaging these professionals? F-2-F is great, but is not always an option. What’s new? What are other juridictions/organizations doing that are considered best practices in health care digicomms? Share what’s worked. And what hasn’t.

Symposium goal: New ideas and insights

Challenge #11: merged

Listen effectively

Submitted by: @Sara_Shear

Currently the burden of effectively sharing an experience and being understood is on patients. Patients are sometimes labeled as “difficult” and denied a seat at advisory councils. Social media have given voice to patients and they have become citizen journalists. Can social media be used to partially shift this burden of patients to healthcare professionals encouraging them to develop effective listening skills mapping through angry stories? And how? Could be this a solution for diversity issues at advisory councils? What are other advantages or disadvantages?

Symposium goal: To see whether patients, caregivers and healthcare professionals find this point valid and to come up with strategies to address it

Challenge #12:

Patient Engagement Network – the place to connect, learn, give and get support

Submitted by: Cecilia Bloxom & Abisaac Saraga @Patient_Safety

In this context, people includes everyone working on patient engagement: patients, families, patient groups as well as providers, managers, leaders, organizations at all system levels. Scope: broad patient and citizen engagement in all dimensions of quality.

Symposium goal: 1) Patient engagement in Canada increases at all system levels,  2) Alignment and/or collaboration for patient engagement programs, policies, strategies increases, and 3) The network members use the network to advance patient engagement and system improvement

Canadian Patient Safety Institute

Challenge #x: Withdrawn

What role do consumer health applications have in our health care system?

Submitted by: @CHS_SFU Scott Lear

The past decade has been witness to an explosion of consumer health applications. Many of these are marketed to improve one or more aspect of a person’s health. Far too many have not been evaluated to justify their marketing or promised outcome. Yet our health care system cannot ignore their presence or the potential of these applications to assist our patients. Is there a role for these applications to work alongside with our delivery of health care?

Symposium goal: To identify the possible concerns and advantages of existing and future privately designed consumer health applications in health care provision.

Simon Fraser University, Community Health Solutions

Challenge #x: withdrawn

Getting Communities on the Bus!

Submitted by: @Kathykm and and Jordan MacGregor

Compassionate Communities (CC) models are critical to normalizing the experiences and needs of citizens and upholds the principle that palliative care is everyone’s business. Communities must be engaged for the CC model to work. As an NPO, the reach and economic benefits of social media make it appealing, but is it an appropriate tool for CC? If yes, which platforms are best for connecting with hidden communities? How do you build a community on a topic that society isn’t comfortable discussing?

Symposium goal: Pallium aims to define the role of social media in CC initiatives and develop a strategic social media toolkit to strengthen and widen our ability to engage with segmented social groups. Toolkit needs to consider return on investment of platforms.

Pallium Canada

Challenge #x: Merged with 11

Citizen Journalists and Social Media

Submitted by: Cecilia Bloxom @Patient_Safety

Right or wrong, people are using social media to tell their story. Maybe there are ways for organizations to handle this when it arises? The other piece is that with phones everyone has the ability to photograph or record everything they see, especially in hospitals or other care settings. Many news stories about patient safety issues feature photos or video provided by patients.

Symposium goal: Vigorous discussion and debate

Canadian Patient Safety Institute

Challenge #x: merged with 9

Engaging staff members in Social Media

Submitted by: Abisaac Saraga @Patient_Safety

Motivating and encouraging staff members to utilize this powerful tool effectively.

Symposium goal: Creative strategies for success

 

Canadian Patient Safety Institute

Moving forward with EMRs

By Dr. Darren Larsen (@larsendarren)

We have come a long way in Canada in getting physicians to adopt digital records systems in the form of office-based electronic medical records (EMRs). In Ontario alone, over 11,600 physicians (both family doctors and specialists) have EMRs in their practices and are using them with varying levels of sophistication. For many of us physicians, the EMR is our lifeline to our patients. It is the environment in which we spend almost all of our day, recording the patient story, reading and thinking about test results and communicating with our peers externally through the creation of referrals, and internally with messaging systems.

Some clinics are starting to push the boundaries of basic use, though, and this is where the power of digital records systems becomes apparent. This is not easy work. The thinking required to move to mature EMR use takes reflection and solid dedicated effort on behalf of physicians, nurses and the staff they employ and is often done off the side of the desk. Advancing to the mature use of EMR presents change management challenges, changing the way we work. How do we convince medical personnel of the benefit of moving forward? How do we make the work palatable in the face of all the other demands facing them every day from the clinical, business and system perspective? How do we do all of this in an already strained system with fewer and fewer payments for participation?

There is a tendency to look to our American neighbours in their advancement of EMR maturity, but models there have been built on massive incentive payments without necessarily a view to how the change can be sustained.

On February 10 at 1pm ET (time zone converter), @OntarioEMRs is hosting the #hcsmca tweetchat to explore barriers and opportunities in the advancement EMR as it applies to both primary care and specialist care. We are posing four big questions to advance the conversation and gather great ideas with the #hcsmca community to help promote change.

• T1: How do you use EMRs now? What do you value in them? As a health professional, patient, researcher, etc.
• T2: What would the EMR of 2030 look like? Where do we need to get to?
• T3: What could/should be done w/ the vast data in EMR systems to improve patient care, relationships & the healthcare system?
• T4: How to move forward/promote the advanced adoption and use of mature EMR systems?

Announcing the National #hcsmca Symposium’s Scholarship Winners

We’re happy to announce the scholarships recipients

Organizers of the first-ever National #hcsmca Symposium immediately realized three things:

1. Canada is big
2. Vancouver isn’t exactly centrally-located
3. Some members of the #hcsmca community may need financial support to attend– members like patients, caregivers and students

So we, the organizers (listed halfway down this post) developed a scholarship program. We co-created scoring criteria and invited applicants to tell us about their involvement with #hcsmca, how they use communications technology for health, why they want to join us in Vancouver. A committee of patients and caregivers reviewed the applications and, ultimately, the number of scholarships we offered was based on the event’s sponsorship income.

And the six scholarships winners are:

• Sara Shearkhani (@Sara_Shear), caregiver from Toronto
• Debra Maione (@PithyWoman), caregiver from Winnipeg
• Deb Maskens (@DebMaskensKCC), patient from Guelph
• Kathy Kastner (@KathyKastner), patient from Toronto
• Annette MacKinnon (@anetto), patient from Toronto
• Sharon Anderson (@shardoranderson), student from Edmonton
• Jessica Inskip (@JessInskip), student from Vancouver

 

 

Thanks to our sponsors, we are able to provide the scholarship recipients with funding to pay for travel, accommodation and registration in full and in advance. Also, thank you to BC Patient Safety & Quality Council and the Quality Forum for making all the travel and accommodation arrangements.

With additional sponsorship, the event will be able to offer more scholarships. Here is more information if your organization would like to join the National #hcsmca Symposium as a sponsor.

We look forward to meeting these six scholarship recipients – and everyone else from the #hcsmca community – on February 24 in Vancouver. If you haven’t registered yet, do it soon. Space is limited.

Chat Summary 249: Health Care Professionals: Speak your mind, but …

This post was originally published on Pat’s blog Days of Past Futures.

By Pat Rich (@pat_health)

On Wednesday, 77 engaged individuals participated in a lively tweet chat at #hcsmca about whether health care professionals have the same rights to free speech when using social media as other members of society. Read the complete #hcsmca chat 249 transcript.

Photo credit: derfelphotogen https://flic.kr/p/67UYEa

The impetus for this chat – which I moderated – were two recent disparate examples of what is happening with Canadian nurses and doctors who use social media. One example was that of a nurse facing disciplinary action from her regulatory body in Saskatchewan for posting details of her late father’s care on her Facebook page. The other referenced the positive response to a blog post by Ontario physician Dr. Gail Beck (@gailyentabeck) about the care received by her husband in a local hospital.

One of the points I wanted to make that was nurses and other allied health professionals who are employees of hospitals or health care institutions may face more restrictions than many physicians who are self-employed because the terms of their employment may limit their right to make public comments about their own institution.

So it is somewhat ironic that two days after the chat, The Medical Post newspaper for physicians posted a gated article quoting an unnamed Hamilton physician as stating many physicians had been threatened with the loss of hospital privileges for vocally criticizing the provincial government for recent pay cuts.

During the chat we were lucky enough to be joined by several physicians including Dr. Beck, who provided their perspective on their ability to use social media.

It quickly became clear from the comments made by these physicians and other informed observers that while health care providers can and should be urged to use social media to make comments and engage in debate, they must do so with caution.

It was noted not only that physicians and other providers all have a sacred duty to protect patient confidentiality but also that the statements made by health care providers may be scrutinized more closely and so extra caution must be taken in what they post.

To quote some notable tweets from that chat:

T1 Believe EVERYONE has right to speak their mind #SoMe or otherwise, but there are always consequences. This applies to HCPs too #hcsmca

— Colin Hung (@Colin_Hung) January 28, 2016

@hcsmca #hcsmca As long as patients’ rights are not infringed, health care professionals should have same rights as all.

— Gail Beck (@GailYentaBeck) January 28, 2016

@hcsmca A loaded question. We have additional regulations we need to follow and more best practice to consider, but we have a voice –#hcsmca

— Rob Fraser MN RN (@rdjfraser) January 28, 2016

T1 As healthcare professional on social media, I’ve learnt to bite my tongue at necessary times (most of the time) #hcsmca

— Sunny Chan (@DrWaiSun) January 28, 2016

Doctors should be aware that everything they tweet is a publication for public domain. Tweet with care & rem confidentiality #tipsfornewdocs

— Sunny Chan (@DrWaiSun) June 28, 2015

T2. Most of my health care colleagues are not on #SoMe because of concerns. However in my 2 years on Twitter it’s been 99% positive. #hcsmca

— Christine Chambers (@DrCChambers) January 28, 2016

@pat_health @cathact Pts & HCPs should be allies. We are different views on same system. Our United voices are engine of change. #hcsmca

— Isabel Jordan (@seastarbatita) January 28, 2016

While the chat just scratched the surface of this important issue for those ‘in the tent’ – be they providers or patients – it was clear the provider voice on social media is an important one that needs to be encouraged.

Why the #hcsmca Symposium is Patients Included

By Isabel Jordan (@seastarbatita)

Isabel Jordan

For me, being involved in #hcsmca exposes me to an incredible diversity of voices. These voices include patients, caregivers, healthcare providers, researchers and healthcare communicators, and others who can’t be easily pigeon-holed into clear categories.

Weekly conversations punctuated by commentary throughout the week has allowed me to make connections, some of them very strong, with people that I simply would never have gotten to know. What’s more, I believe that we have all been able to expand each other’s view of the realities of our healthcare system, providing care and living with health conditions. Social media let us speak to each other plainly, concisely and connect meaningfully. It doesn’t matter that you are at work, taking a break between patients or clients and that I am at home looking after my son wondering when I will hear from one of his health care providers next. We are all, together, having a conversation about the meaning of better health care and community; titles, jobs, heck, time of day, fall by the wayside.

However, in the world of conferences and in person events, it’s tougher. For too long those health care conversations have been held about patients but not with patients. To be frank, if we are going to get to the solutions that work best to improve health care, we can’t afford to not to include the voices of patients and caregivers. We hold a wealth of knowledge and experience that we want to offer, and we don’t want to be kept outside closed doors.  

Even with the best of intentions, it can be difficult for conference organizers to make their events inclusive of patients and caregivers. It takes more than just saying, “hey everyone, come on in.” Patients and caregivers face real and systemic barriers to attending medical conferences, not just cultural ones.

Recognizing these barriers, the Patients Included charter was created to help conference organizers structure their events to welcome and integrate patients and caregivers from planning, to speaking and attending. The Patients Included charter outlines 5 clauses facilitating authentic patient participation – patient participation that is meaningful and will make the conference better for all participants.

The 5 charter clauses are the starting point to get patients in the door. And I say starting point because I think that once conference organizers start including patients, they’ll recognize the value and grow that inclusion in subsequent years.

Deciding to take the online #hcsmca model offline to a National #hcsmca Symposium is incredibly exciting. And we made sure we met all 5 clauses:

1. I, as a caregiver, am a member of the Symposium Planning Committee. Patients reviewed the scholarship applications. The event is an unconference. All attendees are involved in the planning and design. 
2. Patients and caregivers are attending, speaking and leading sessions at the symposium.
3. Scholarships were awarded to 2 patients, 2 caregivers and 2 students. Travel and accommodations have been arranged and paid for. With additional sponsorship, we will add more scholarships.
4. Accommodations will be made where necessary.
5. The main stage will be livestreamed. Virtual participants can also follow #hcsmca. Notes and pictures from the break-out session will be open-access.

For the #hcsmca community, Patients Included recognizes what we already know – patients and caregivers are valuable contributors to our diverse community. Sure, those that attend benefit, but really, the whole community benefits from their inclusion. Even if I, as a caregiver, say so myself.

Don’t miss this event. 

Preparing for #RareDiseaseDay: Do stories change anything?

By Emma Rooney (@blumencasey)

Emma Rooney

A rare disease is an uncommon disorder that on its own affects a minute percentage of the world’s population. Despite this rarity, when you look at rare diseases together, the list of identified diseases grows beyond 7,000 conditions, the highest percentage of these genetic. Rare Disease Day was started in 2008 by EURORDIS (the European Organization for Rare Diseases) to place a spotlight on this often neglected health priority. According to the patient advocacy organization Global Genes, rare diseases affect 350 million people worldwide. While rare diseases are extremely diverse, many people living with a rare disease confront misdiagnosis or having no diagnosis, nonexistent treatment options, and major inequities in accessing care and support. Rare disease groups have a history of banding together and forming umbrella organizations to share best practices and be more effective in working to strengthen the rare disease community. Rare Disease Day invites broad community participation and is a vital opportunity to campaign for global awareness.

This year’s Rare Disease Day comes up on leap day, Monday, February 29th. Patient Voice is the 2016 theme, a fitting selection at a time when rare disease patients, spurred by technology, are connected and contributing to healthcare like never before. Where facts and figures can easily be ignored, sharing stories has always been critical to getting voices heard. You’ll be hard pressed to find anyone saying that patients shouldn’t be listened to. Storytelling has become a much loved buzzword that we can all get behind.

As a rare disease advocate, producing Emma’s Garden: Growing with Gaucher, a digital story of growing up with type 1 Gaucher disease, was a meaningful way to share my patient experience. I later recorded a letter to my parents expressing what the storymaking process had been like and my gratitude to my family for being involved. On many occasions, stating that my interests lie in storytelling has proved to be the perfect conversation opener. In contrast, despite equal passion in presentation, asking for a donation, explaining involvement in lobbying efforts to access a new treatment, or trying to sell research experience, from having been a test subject in clinical trials, has enlisted far less support. Even people who seem never to have given much thought to the world of rare diseases can tell me of an astonishing rare disease story they saw in the news.

Patients are telling rare disease stories all around us. We have a growing number of dedicated rare disease news sites. Rare disease patients are invited to speak at medical conferences and events and to participate on advisory boards. Patients are actively sharing their stories through blogging, social media, online support communities, and crowdfunding platforms. Every website you visit now has a “share your story” button and marketing firms are hunting down engaging patient talent on behalf of the biotech and pharma industry. Rare disease stories have become prolific.

As we count down to Rare Disease Day, patient stories will naturally be encouraged and the reception to stories positive. We also have an opening to think critically about how stories get acted on. Health blogger Annette McKinnon drew attention to this on Twitter stating,

Patients want to be more than catalysts and story tellers. What we know has value for the health system #hcsmca

— Annette McKinnon (@anetto) January 13, 2016

So on Wednesday, February 3^rd at 1pm ET (time zone converter) join the #hcsmca weekly chat to discuss how stories can change things.

In the chat we will cover:

• T1. How do patient stories impact the rare disease community?
• T2. How can we better value patient stories and respond to the insights shared?
• T3. What benefits should patients look for from contributing their stories?
• T4. What stories are missing from the rare disease community and how can we encourage different voices?

Here’s a developing list of where to find online stories from rare disease patients. You are invited to add your favorite sources and places to share stories.

Health Care Professionals: Speak your mind, but …

By Pat Rich (@pat_health)

Pat Rich

A Saskatchewan nurse puts a post on her Facebook page detailing some concerns (and praise) about the care received by her grandfather while in a specific palliative care unit – Facebook post leaves Prince Albert, Sask. nurse charged with professional misconduct. She now faces disciplinary charges from the provincial registered nurses association for “violation of confidentiality, failure to follow proper channels, impact on reputation of facility and staff, failure to first obtain all the facts, and using status of registered nurse of personal purposes under the Code of Ethics for Registered Nurses.”

An Ottawa physician posts a blog – 2 Hospital Days – about her husband’s stay in a local hospital documenting the deteriorating conditions he experienced. She names the hospital and talks about how, with the health care system in general “staffing has been systematically decreased, equipment has not been replaced appropriately, buildings have been left to crumble and food and cleaning have been outsourced to the point that these do not meet the standards for nourishment and cleanliness that most health care professionals would want for themselves.” She is widely applauded for the post, especially by her peers.

Both of these cases are true and both have occurred within the last couple of weeks.

They demonstrate the full spectrum of the challenges and opportunities for health care practitioners of all disciplines who want to participate fully in the 21^st century.

The former case provides a textbook vindication for nurses and physicians who are deeply suspicious of social media and are convinced their regulatory bodies have little tolerance for any practitioner foolish enough to use social media.

The latter case demonstrates that a credible health care practitioner voice can have a big impact through the use of personal narrative – a well-recognized strength of social media especially when it comes to telling patient stories.

It’s a complex landscape through which we walk.

All credible authorities acknowledge that extra care must be taken on social media to protect patient privacy and confidentiality. But does this extend to an individual who just happens to be a health care practitioner who wants to discuss what has happened to a family member?

Is it appropriate for regulatory authorities or associations who represent nurses to state that it is unethical for an individual to call the profession into question?

And what of issue of whistleblowing and the power of social media to document unsafe, unethical or just plain stupid activities within one’s own hospital or health region?

On January 27 at 9pm ET (time zone converter), let’s open up the #hcsmca floor for debate:

• T1: Should health care providers have the same rights as others to express themselves on social media?
• T2: Do you have a personal experience or knowledge of a health care colleague who has felt constrained from telling their story on social media or alternately have effectively used social media channels to document a concern?
• T3: Is it valid to place additional constraints on health care professionals to maintain the credibility and integrity of those professions?

Photo credit: derfelphotogen on Flickr https://flic.kr/p/67UYEa

National #hcsmca Symposium Lands Out West: Why Vancouver?

Photo credit: Michelle Preston, BC Patient Safety Learning System

By Robyn Sussel, Signals.ca and Evening Rounds

Robyn Sussel

Why is the first national symposium of the #hcsmca community being held in Vancouver?

#hcsmca was founded in Toronto by Colleen Young, making Toronto its birth place. However uptake quickly spread and active #hcmsca members came from across Canada, even open to input in French due to the many bilingual participants involved.

So why Vancouver?

One of the many great strengths of #hcsmca is its diversity and also openness to experiences beyond Toronto — including tweet chats on telehealth and e-health for rural settings and how social media communities can support people who have poor access to a family doctor, to name just a couple. In fact, when looking back through the list of topics over the five year life of #hcsmca, most of them are universal to Canadian patients, health providers and health communicators —  and not at all Toronto-centric!

So it was no surprise to me when I floated the idea of holding a national conference in somewhere other than Toronto that Colleen and others in the community jumped at the opportunity. They felt that holding the meeting in Vancouver actually demonstrated the strength of the connections we have formed through our virtual community — and could also afford people in Western Canada an extra opportunity to attend such a watershed event.

Our organizing committee has a strong contingent from Vancouver but we are from across Canada. In addition to myself, the organizers are: Marina Bastawrous, Toronto; Janelle Chung, Vancouver; Colin Hung, Toronto;  Isabel Jordan, Squamish BC; Lori Last, Vancouver; Leah Lockhart, Vancouver; Trish Paton, Edmonton; Pat Rich, Ottawa; Kevin Smith, Vancouver; and Colleen Young, Toronto.

Another reason why Vancouver is a logical location, is that here in Vancouver we pioneered an in-person “off-shoot” of #hcsmca that we called “Evening Rounds.” Evening Rounds was created three years ago after several successful “west coast” #hcsmca tweet ups. The people who gathered really wanted more opportunities to learn and share experiences in health care and digital technologies. Co-founded by Dan Hooker, Alissa Sadler, Sean Cranbury and myself, Evening Rounds was fashioned as a monthly speaker series and networking meeting with my firm (Signals) and Providence Health Care as co-sponsors. So we have a local active and engaged community that will play host to our colleagues from east of the Rockies! I encourage any Evening Rounds regulars to quickly get registered for the #hcsmca event!

And finally, the last and very important reason why Vancouver makes sense is that the BC Patient Safety and Quality Council stepped up to support a one day event in conjunction with their annual Quality Forum. The logistical support of this forward-thinking and digitally savvy group ensured that this dream  — cooked up by a few #hcsmca-ers scattered across Canada  — came to fruition. We are very grateful for their support.

I’m not even going to mention that Vancouver in February is probably the most pleasant spot in the country with all the snow safely ensconced in the mountains. And that’s because I’m going to write another blog post on all the wonderful things to do in and around the city towards the end of February.

While you’re making your travel plans, I would really encourage you to also attend the Quality Forum 2016. While some of the content and case studies are from BC, like #hcsmca, the topics are all very transferable and translatable across the Canadian health care landscape. Registration fees are very reasonable, and as an attendee from past QF’s I know you will learn a great deal.

If you haven’t yet registered for the #hcsmca symposium, please do so quickly as space is limited to just 150 people. You can also access discount room rates at the gorgeous Hyatt Regency Vancouver.

As the moderator of the day’s event, and an ambassador for Evening Rounds, I look forward to welcoming you to my city on February 24th.