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Wed. May 27, 2015 at 9pm ET (10pm AT, 8pm CT, 7pm MT, 6pm PT)
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Authentic storytelling in healthcare

May 22, 2015

By Christoph Trappe (@CTrappe)

headshot of Christoph Trappe

Christoph Trappe

Stories connect families, communities and organizations. Some stories are positive, others are negative and some are closer to neutral, but no matter the organization, people share stories about it.

People share their experiences with others. They share their perceptions. Sometimes they share their evaluations of a situation – right or wrong.

Authentic stories in healthcare can be told from the perspective of the organization or the patient. Stories can also be told from other perspectives, like a patient’s spouse, an employee or somebody else. For this post, I’ll focus on the organization and patient perspectives.

The biggest sticky point happens when a person shares a story publicly that includes someone else and that person does not agree with the author’s representation of the facts. And there can be multiple versions of the perceived facts with none of them completely accurate or inaccurate. Sometimes all versions are accurate; just different points of view.

For that reason, it’s good to invite people to collaborate in the storytelling process. Here’s how that could work.

For organizations

Having found a story worth sharing, invite the main players to tell it in their own words.

  • “Here’s what happened to me….’
  • “Here’s what that meant to me and how it affected me…”

Then you may have a person from the organization add their perspective. Finally, a subject matter expert may add context that has not been discussed yet.

  • “Here’s what this means to all of us…”
  • “_______ is part of a growing trend of … Here’s what we are doing about it…”

Collaboration creates an authentic story that is more than a status quo marketing message. In this video excerpt, I demonstrate how the status quo can be hard to change. It is possible. But it takes effort.

For patients

People share things publicly when it makes them look good or when they are really mad about something. Sharing a rant might feel therapeutic but usually doesn’t help many others. Authentic stories aren’t always positive and that’s OK. But even when they are not, there are ways to share them that allows others to learn from them.

I’ve shared two very personal stories publicly. One about a miscarriage and another about seeing a plastic surgeon. Eight years passed before I could publish my story about the miscarriage. In both cases, I tried to share the stories in a way that they might be educational for others. Maybe even inspiring.

Rants aren’t usually educational. So before publishing one, first think about what good it will do. Is there a way that it can be rewritten in a way to be educational for others? Also, consider how the subject of your rant might feel about the story and if they don’t agree with your recollection. I recommend reaching out and sharing your perception of the story with them.

Authentic storytelling isn’t as simple as sitting down and just starting to share stories. When done right, it can be mutually beneficial for both individuals and organizations.

I look forward to discussing further with #hcsmca May 27 at 9pm ET.

  • T1: As patient, what effective way(s) have you told your story or stories publicly?
  • T2: If you have shared your story publicly, what motivated you to share it? did you face any challenges?
  • T3: What examples of good storytelling have you seen? By patients? By organizations?
  • T4: What are the barriers have you run into in organizational storytelling?

Patients Included Charter: Making it adoptable rather than daunting

May 19, 2015

Too many health and medical conferences continue to exclude patients and family caregivers. How can we change that? #patientsincluded logo

On 1 May 2015, a group of volunteers, spearheaded by Andrew Spong (@AndrewSpong), crowdsourced Patients Included: A Charter for Conferences. Based on Lucien Englen’s declaration, it contains 5 clauses that address the inclusion of patients on planning committees, on stages, and in audiences at medical meetings and conferences.


Patients Included Charter clauses

  1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
  2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
  3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance.
  4. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
  5. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
  6. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.

What is the purpose of the Patients Included charter?

“The Patients Included charter provides conference organisers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited.”

How can a conference achieve Patients Included status?

“Patients Included status is self-assessed. A conference successfully meeting all 5 of the charter’s clauses may accredit itself as a Patients Included event.”

Medical conferences that are certain they meet the criteria have the right to use the “Patients Included” logo. It is downloadable as JPG or as PNG or TIFF or PDF and can be used free of copyright.

The charter authors set out to create a charter that is concise and relatively easy to adopt. Using simplicity as our guiding principle, we hope that more and more conferences organizers will include patients and family caregivers. It will hopefully also help support people who wish to provide guidance to conference organizers. We are confident that conference organizers will rapidly come to realize the benefits and will go beyond the minimal requirements outlined in the charter.

As a #PatientsIncluded co-author, I’d like to use this week’s #hcsmca chat to discuss how we can encourage the adoption of the charter. Join me, Andrew and other co-authors on Wednesday, May 20 at 1pm ET  (time zone converter).

  • T1: How might we help conference organizers to view #PatientsIncluded clauses of the Charter as approachable rather than daunting?
  • T2: How can #PatientsIncluded help to add diversity (in terms of geography, diseases represented, demographic considerations) to conferences?
  • T3: Could the #PatientsIncluded approach have an impact on clinical trial design and reimbursement decisions? (See 3rd last paragraph of blog by Paul Tunnah)

I also encourage you to read the various articles written by some of the charter’s co-authors.

Please let me know if a blog should be added to this list.

Chat 220 Summary: Exercise is Medicine

May 15, 2015

By Amy Snow (@ayms219)

On May 13, 2015, Susan Yungblut (@EIM_Canada), and Kate O’Connor (@CPA_Kate) led an #hcsmca chat about physical activity, social media and health — Exercise is Medicine. They asked:

  • T1: How does being connected to social media and technology impact your physical activity level?
  • T2: Can social media be used to increase physical activity or improve health outcomes?
  • T3: How can health professionals set a better example when it comes to exercise?
  • T4: Is it realistic to expect care providers to prescribe exercise to patients?

Read transcript 220 to get all the details.

Amy Snow (@ayms219) prepared this graphic summary of the chat.

graphic summary of chat 220 - Exercise is Medicine

Chat 219 Summary: Social Media Tools You Use

May 11, 2015

By Shoshana Hahn-Goldberg (@HahnGoldberg)

On May 6, 2015, #hcsmca participants reviewed The Social Media Tools We Use – How and Why? This definitely wasn’t the same conversation we would’ve had 4+ years ago when #hcsmca first started. Read transcript 219 to get all the details.

Not surprising, for a good part of the chat we talked about visuals, including tools to make infographics and how to best visually capture data, stories and attention. Then I posted this.

@eTreatMD @HahnGoldberg and @TrishPaton raised a virtual hand. Thus begins a new tradition for #hcsmca where members explore different ways to summarize the chat. They are going explore different tools such as PiktoChart, Canva and Storify, and at a future chat reveal the pros and cons. Along the way, they’ll get feedback from the designers at @UHNOpenLab.

Let me know if you’re interested in the #hcsmca Summary group.

Here then, is the first summary – chat #219 – from the group by Shoshana Hahn-Goldberg (@HahnGoldberg), Post-Doctoral Fellow at OpenLab.

As we experiment and learn, feel free to provide consturctive feedback about the graphic below.

infographic of chat 219

Exercise is Medicine

May 8, 2015

On May 13, 2015 at 1 pm ET, Exercise is Medicine Canada’s (EIMC) Director, Susan Yungblut (@EIM_Canada), and the Canadian Physiotherapy Association’s Director of Practice and Policy, Kate O’Connor (@CPA_Kate) will moderate #hcsmca. Susan is a physiotherapist and a national leader working to promote physical activity as a chronic disease prevention and management strategy to improve the health of Canadians. Kate is an engaged supporter of EIMC.

By Susan Yungblut and Kate O’Connor

“What if there was one prescription that could prevent and treat dozens of diseases, such as diabetes, hypertension and obesity? Would you prescribe it to your patients? Certainly.” Dr. Bob Sallis

headshot of Susan Yungblut

Susan Yungblut

headshot of Kate O'Connor

Kate O’Connor

Social media is riddled with miracle cures, 30-day challenges, fad diets, and the “science” behind living a long and healthy life. Yet, despite the widespread proliferation of health and fitness information, the vast majority of Canadians can’t seem to reach the physical activity guidelines.

23 1/2 hours…

A few years ago Toronto physician, Dr. Mike Evans (@docmikeevans), created a visual lecture on the single best thing we can do for our health. The answer is physical activity. There is strong evidence to show the best medicine for both avoiding, as well as treating, cardio vascular disease, type 2 diabetes, obesity, hypertension, and even some forms of cancer is exercise.

In this video the main message is “Can you reduce your sitting and sleeping to just 23 1/2 hours a day?” It’s pretty simple and seems like an achievable goal, but the reality is most Canadians can’t. According to Statistics Canada, 85% of adults and 93% of children and youth are not meeting Canadian Physical Activity Guidelines. For adults this means 150 minutes a week of moderate to vigorous aerobic activity, for kids this increases to 60 minutes a day to help growing bodies stay strong and healthy.

Intensity matters

I would like to highlight the idea of intensity. I believe there are many people who think they are

achieving Physical Activity Guidelines without realizing what is actually required. After all, if you can reach your five dot FitBit goal you must be doing something right! Well, not so much. It’s not just about the number of steps you take, but the quality or intensity of those steps. To achieve the minimum level of physical activity to maintain good health you have to be breathing heavy or breaking a sweat. This is an area where I think health professionals could be doing a better job at knowledge transfer.

Using exercise as a vital sign

Health professionals are experts in health, but I would argue they can fall short when it comes to prescribing common sense. When it comes to the questions asked during a routine check-up, your primary care provider will ask about smoking, alcohol and drug consumption habits, and check your blood pressure and Body Mass Index (BMI). But, measuring exercise or activity levels is not used as an indicator even though it is just as important a vital sign for measuring the health of the average patient.

Exercise IS medicine

What would happen if every health professional assessed exercise as a vital sign at every patient visit? As health systems are increasingly conscious of cost-containment, allocation of resources and quality improvement, there is something to be said for getting back to the basics. Today, health and fitness apps are the top growing app category with an estimated 1.7 billion people expected to download health apps by 2017. If economics tells us anything, there is a clear demand driving the market when it comes to exercise.

I would argue health literacy has to be quite high to trust an app that claims to diagnose a serious illness or help manage a complex disease, but the concept is a good one. We want to have more informed patients and citizens, but we don’t want healthcare simplified to the point of replacing a highly educated and skilled professional with a $0.99 download. What we need, however, are health professionals using this consumer interest to prescribe change. Exercise is Medicine Canada was launched to provide national leadership in promoting physical activity as a chronic disease prevention and management strategy to improve the health of Canadians. Buy patients and primary health care providers have to be on board if we are to move common sense to common practice.

For the #hcsmca chat on May 13, 2015 at 1 PM ET (time zone converter), we will be discussing how health professionals and patients use social media to share evidence, link to peers and monitor health news and trends related to health, fitness and physical activity.

  • T1: How does being connected to social media and technology impact your physical activity level?
  • T2: Can social media be used to increase physical activity or improve health outcomes?
  • T3: How can health professionals set a better example when it comes to exercise?
  • T4: Is it realistic to expect care providers to prescribe exercise to patients?

The Social Media Tools You Use – How and Why?

May 6, 2015
Social Media icons on phone

Photo credit: Jason Howie on Flickr

We’ve been tackling some pretty big topics on #hcsmca lately. Today, I’d like to go back to basics and review the social media tools we use. Let’s explore how we use them and why, and also our social media behaviours and habits.

I’ll set up the chat with these questions, but you know how it goes. I’ll ultimately follow the path that the conversation takes. Join me today, May 6 at 1pm ET (time zone converter).

  • T1: What social media platforms do you actively use? How and why?
  • T2: What social media platforms have you tried and abandoned? Why?
  • T3: Are you typically an early adopter or do you wait and see?
  • T4: Are you more a text or graphic person? How do you mix the two?
  • T5: Participants’ choice …. tbd.

What question would you add?

Image via Flickr CC.

Has the patient voice silenced others? Balancing voices for better health care

April 28, 2015

By Javed Alloo (@javedalloo) and Colleen Young (@colleen_young)

headshot of Dr Javed Alloo

Javed Alloo

Headshot Colleen Young

Colleen Young

#PatientsIncluded is a mantra that many members of #hcsmca live and champion. In particular at medical and health conferences, the #PatientsIncluded cry grows louder and even led to the development of the Patients Included Charter (It will be published on May 1. See a preview here.)

Involving patients as experts in living with their condition and families has long been the missing link at conferences, meetings and decision-making tables within our healthcare systems. More and more organizations, institutions and conference organizers recognize the need (nay necessity) of including the patient voice and several are doing it well.

Stanford Medicine X, for example, is often applauded as a leading example of including patients and family caregivers from planning to presenting and attending the conference to disseminating learnings beyond the conference walls and hallway conversations.

The power and need of patients and family stories are undeniable. But what if the pendulum swings too far? This is what we both observed at Stanford Medicine X last fall. Several physicians shared with Colleen privately or hesitantly in public that they did not feel comfortable asking a question in the plenary hall at Medicine X following patient presentations and panels  – that as an MD they felt they shouldn’t. Javed noted in his article in Future Practice:

“…There are patients present for nearly every moment onstage – a conscious expression that health care can’t be effectively conceived without keeping its purpose (health for patients) as the central focus.

Sometimes this atmosphere makes conversations difficult. I fear that the pressure to be politically correct might prevent honest discussions about the barriers to delivering the desired kind of care. …”

Our purpose is not to single out Medicine X, but rather use it to illustrate a situation that may be happening “off-stage” as organizations forge ahead with patient and family engagement to improve healthcare delivery.

Health is a personal experience. Health care is a team effort. How do we reconcile the two?

Nothing about me, without me” makes a lot of sense, given that the main purpose of a health system is to meet the health needs of patients and families. Figuring out what “health” means to a patient and what health goals are important helps identify what the patient, their supporters, the health providers and the health system need to do. If we don’t understand this, the health system funders (the provincial governments in Canada), institutions and providers might make decisions and work in ways that don’t accomplish the health goals most important to patients. And making formal room for patient and family views can help overcome situations where people feel intimidated or unable to speak up during the course of their individual health journey. All in all, it seems pretty logical to include all the people affected by health care decisions in these conversations.

But has the power of the personal rendered mute others who share in the health experience medically? When faced with a patient’s intense and emotional narrative of their health experience, institutions and providers may feel uncomfortable questioning the broad applicability of the goals an individual patient describes, or the priority of addressing that goal rather than other competing patient health outcomes.

On April 29th at 9pm ET (time zone converter), #hcsmca would like to flag an issue that may be happening and may not have yet bubbled to the surface of public conversation before the pendulum swings too far. Join us to seek answers to the following questions.

  • T1: Has the rise of the patient voice silenced or enabled the other voices in healthcare? How?
  • T2: With the rise of the patient voice is it more difficult to have an unbiased discussion around strategies and priorities when identifying health solutions?
  • T3: Are the sustainability of demands on providers and the system given necessary weight in these joint discussions?
  • T4: How might we create an environment that empowers patients and doesn’t silence other voices?
  • T1: Have you been involved in healthcare system change or research where a representative voice was silenced? #hcsmca
  • T2: How might patient advocates/activists ​have inadvertently muted voices? Whose? From which healthcare sectors? #hcsmca
  • T3: How have public conversations about health solutions changed since patients have become more vocal online and off? #hcsmca
  • T4a: What new “rules of engagement” between providers and patients are emerging? #hcsmca
  • T4b: What new rules of engagement need to emerge? #hcsmca
  • T5: How might we create an environment that empowers patients and doesn’t silence others? #hcsmca

Read the April 29 #hcsmca transcript.