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What’s your relationship with privacy? Um, it’s complicated.

June 19, 2015

By Jodi Sperber (@jsperber)

Capture of Facebook status

Headshot of Jodi Sperber  Photo by Gilles Frydman

Jodi Sperber
Photo by Gilles Frydman

Last year, I sat in the audience at a MedX panel, listening intently to a conversation about communicating the experience of illness in the digital age. This session, captured succinctly on Storify, touched upon a broad range of topics, from disclosure to ethics to the need for “radical hospitality” (in quotes just because I love that as a phrase) to build community. Several individuals raised the notion of privacy and its significance, and at the very end of the session I stood at the mic to underscore the notion that privacy was less about keeping something secret and more about the control of information flow (here is one of my favorite posts on this topic). I suggested that the topic of reframing privacy was a topic for ongoing discussion within the MedX community.

Little did I know at that moment that this would be a panel the following year. Or that I would be on it.

And that’s the beauty of MedX: It’s never the end of a session. It’s the beginning of a conversation.

MedX aims to breaks down artificial barriers between Us and Them, Panelists and Attendees, Patients and Professionals. A culture has been nurtured that invites participation from everyone, whether or not you are in the physical space at the time it is taking place. So much so that even introverts like me are eager to take part.

tweet captureThis year’s panel started innocently (and fittingly) enough: with a tweet. From there it grew into a conversation on what privacy means to each of us, how it’s often hastily applied in many different contexts without consideration of whether there is alignment in how each party defines and interprets the concept. The term is used to drive and divert so many decisions in healthcare, but what do we mean when we use it?

Colleen, Wendy Sue, Susannah, Pam and I believe that this remains an area ripe for debate. We also know that MedX is the perfect space for this type of nuanced dialogue, as it draws a passionate crowd of doers and dreamers.

And by dialogue, I mean all of us. You, too. This is a part of what makes MedX great, and why I am so excited to be returning this year. The conference itself is only a few days, but the movement surrounding it continues indefinitely. In some ways the event feels like a homecoming for a family that I’ve been speaking with remotely throughout the year.

As with the last session, we’re excited to flip the panel and jump-start the conversation. This is just the first post in a series leading up to the panel itself, and we want to know what your thoughts are on the intersection of privacy of innovation. Here are some initial questions to consider:

  • How do you define privacy?
  • How do you apply it?
  • When it comes to social media and other online spaces, have you resigned to give it up entirely?

In addition to blog posts and tweets, we are starting to create spaces to collect and share resources. All that we generate together will be our textbook; a dynamic and vibrant guide to help us shape how we shape programs, products, policy, and everyday interactions with regard to privacy.

We look forward to taking on the topic of privacy. Together. Join the discussion in the comments or on Twitter using the hashtag #medx.

Chat 225 Summary: Infoway plans Digital Health Week with #hcsmca

June 23, 2015

On June 17, 2015, Canada Health Infoway (@infoway) asked #hcsmca-ers to help shape Digital Health Week 2015, which takes place November 16-22. We, along with co-host Pat Rich (@cmaer), talked about goals, calls to action and ways to encourage meaningful participation. Read transcript 225 to get all the details.

Shoshana Hahn-Goldberg (@HahnGoldberg) captured the chat in this infographic.

Infographic of #hcsmca chat 225

Graphic prepared by Shoshana Hahn-Goldberg

What Does Caring Mean When It Comes To Social Media in Medicine?

June 18, 2015

This original version of this post was first published on the The AMS Phoenix Project blog in February 2015. It’s appearance prompted #hcsmca to invite Dr. Karen Devon to host a chat on the same topic Wednesday, June 24 at 9pm ET (time zone converter). Chat questions and additional reading have been added.

By Karen Devon (@specialkdmd)

headshot of Karen Devon, MD

Karen Devon

Imagine that your surgical resident approaches you about the patient you are meant to operate on tomorrow. “I know that being a smoker makes this operation much more likely to fail and I just found out that Mrs. SB smokes”. “Really? How do you know” you ask. “Um, well, Facebook. She’s um, well, my friend’s friend’s friend’s mom…

This is the type of case that sparks debate as I found out on a recent ethics panel at the American Surgical Congress. It really brings us back to the question of caring for our patients. Is caring for our patients letting them make potentially medically unsound decisions and keeping all information they wish private in the name of autonomy? Or does it mean digging deeper into this issue and sharing with our patients what we found and how, with the end result of potentially delaying the procedure to ensure adequate healing?

Furthermore, if indeed searchable information provides a lot of additional information that would allow us to better treat patients, do we have an obligation to do so as part of the medical history? Unfortunately the issue isn’t quite so simple and will require some thoughtful consideration in this new age of social media.

What can be said about accuracy of information found during online public searches? If information that is public is posted by people other than the person involved, is it really considered public in the moral, rather than the legal sense?

Patients are weighing in as well, with several communications and blogs out recently in which they ask whether their doctor should be allowed to Google them. While many of us can see the potential utility in such a practice and think of emergency situations where this might be extremely beneficial, there are certainly concerns.

We must maintain our doctor-patient relationships, which are built on honest communications and trust. For instance, if my life partner felt it was necessary to Google me for more information, that would certainly affect the question of trust between us. If they did so and were unable to express their intent in such a search, things might get even more tense and lead to breakdown. On the other hand, if a search was intended to help or protect me, on an issue where I needed or desired help, I might feel differently.

Social media is stimulating many more questions about what caring really is. It has been called the new house call – allowing practitioners to respond to patients’ needs in the place that the patient is seeking assistance. In fact, while many see technologies as creating a physical distance between providers and patients, I can also see the technology as bridging a gap, perhaps as the telephone did many years ago at its inception.

When I give a patient the ability to connect with me online, I become accessible to them in a way that may not have been possible in recent years. And I hope that I am becoming accessible in more than only the physical way. My participation on Twitter is a part of my personal and professional life that I hope has humanized me, “the surgeon,” in a way that is positive and engenders confidence.

Finally, how can we begin to deal with the exponential increase in knowledge, but also in misinformation if, as a profession, we do not engage? For example, anti-medical social media campaigns have contributed to resurgent epidemics in infectious disease. If we extend our definition of caring to public health advocacy, do we then have a moral obligation to care by tweeting the new Facebook link to organ donation registries around the world? I’m not sure that is the case currently, but I do envision a future where active participation in social media is a requirement of professionalism and an important part of the #newandimproveddoctorpatientrelationship.

There remain more questions than answers. For the #hcsmca chat on Wednesday, June 24 9pm ET (time zone converter) we’ll use the following questions to guide the discussion

  • T1: Have you ever searched for a patient online
    a. What were you looking for ?
    b. How would you assess information for accuracy?
  • T2: Do you have concerns about searching for publicly available information about patients?
    a. How would you feel about this as a patient?
    b. Would you disclose to patient?
  • T3:Is it ever within professional boundaries to “google” a patient?
    a. What would be good reasons? (ie. duty to warn, concern about safety or suicide, discrepancies in history and patient claims)
    b. When is it inappropriate? (ie. Voyeurism, interest in personal life)

Additional reading

Baker MJ, George DR, Kauffman GL Jr. Navigating the Google blind spot: an emerging need for professional guidelines to address patient-targeted googling. J Gen Intern Med. 2015 Jan;30(1):6-7. doi: 10.1007/s11606-014-3030-7. Accessed June 18, 2015

Goldman, Brian. Doctors Who ‘Google’ Their Patients. White Coat, Black Art blog. CBC Radio. Accessed June 18, 2015.

Help shape digital health awareness week

June 11, 2015

By Shelagh Maloney, Vice President, Communications, Canada Health Infoway

Shelagh Maloney

Shelagh Maloney

Throughout the year, organizations use awareness days, weeks and months to commemorate and draw public attention to hundreds of issues and causes.  Last year, 18 supporting organizations, including #hcsmca and Canada Health Infoway (@Infoway), hosted Canada’s first digital health week in November.

This initial effort testing community and public support was met with such resounding interest that we are looking to grow our plans this year. On this week’s #hcsmca chat we’d like to brainstorm how we can make Digital Health Week 2015 (November 16-22) stand out and be meaningful for Canadians. But first, some facts.

Public opinion survey data shows[i]:

  • Nearly all Canadians (93%) continue to support the development of electronic health records (EHRs).
  • Almost half of Canadians (48%) believe that without EHRs, the quality of health care in Canada will deteriorate over time; this has increased by 9 percentage points since 2012.
  • Canadians are consistent across the country and across demographics in their support for consumer-facing technologies such as:
    • View electronic health records (92%)
    • View lab results online (90%)
    • View medications/prescriptions online (89%)
    • Request e-prescriptions (89%)
    • e-Book appointments (89%)
  • Top three perceived benefits of digital health:
    • Makes accessing health care services easier and more convenient – 76% agree
    • Makes interacting with multiple health care providers better and easier – 76% agree
    • Makes the health care system more efficient – 74% agree

Reaching Canadians

Understanding the habits and behaviours of Canadians in accessing and posting health information online helps us think about how we can reach them in a meaningful way through our awareness activities.  In a survey of Canadians[ii], the findings showed:

  • Nearly half have actively looked for health information online.
  • The most common places to look are search engines such as Google, WebMD, Wikipedia and disease specific websites.
  • Half of those surveyed have used/followed health information they found online.
  • 13% have shared personal health info online, mostly on Facebook, or patient community sites.
  • One-quarter report using health apps.

HCSMCA - Digital Health Week

Let’s crowdsource ideas to help shape Digital Health Week 2015.  On June 17, I look forward to discussing with #HCSMCA your thoughts on:

  • T1: What do you think should be the goal of digital health week?
  • T2: What Call to Action during digital health week would be meaningful to Canadians? To you?
  • T3: How do we execute this (channels, messages, and activities)? Working with champions/influencers?

[i] 2014, What Canadians Think, Harris Decima Public Opinion Survey

[ii] 2015, What Canadians Think, Ipsos Reid Public Opinion Survey

Making the Social Media Revolution & Public Physician Free – 2 free e-books

June 10, 2015

I’m excited to tell #hcsmca-ers and followers of my blog about 2 e-books that recently became free to download.

The Mayo Clinic’s Bringing the Social Media Revolution to Health and Dr. Bryan Vartabedian’s The Public Physician.

#hcsmca played a part in each of these books.

I contributed an essay in the Mayo Clinic book called Twitter Chats Build Community, obviously based on my experience with the #hcsmca community. And last October, Bryan and his book were featured on #hcsmca chat #195 The Public Physician: @Doctor_V guest on #hcsmca. Hearing from #hcsmca was one outlet supporting the author in his quest to constantly keep the contents of the book up-to-date and responsive through community participation.

Click the images to download the books.

Bringing the social media revolution to health care book cover

Book cover of The Public Physician

Share with your friends and colleagues.

The Arts Will Save Health Care

June 5, 2015

By Kendra Delicaet (@UHNOpenLab)

From theatre, to visual arts, music and dance, the arts are a significant bridge between the patient experience and healthcare professionals. The Art Heals Health | Health Heals Art symposium brings together artists, healthcare professionals and patients to celebrate the extraordinary practices at the intersection of the arts and health care. This inaugural event – a collaboration between OpenLab @UHNOpenLab, the Al and Malka Green Artists’ Health Centre and the Artists’ Health Alliance @health4artists – will provide a platform for sharing insights, setting the foundation for future collaborations, and building recognition of the value of the arts in healthcare with healthcare executives and policy makers while fostering network linkages through existing arts and healthcare organizations.

Art Heals Health Health Heals Art logo

History of art in healthcare in Canada

The use of art in healing has been a core tenet for many cultures throughout history. From the healing energy created through dance by the Saan Bushmen of Bostwana and Namibia to Canadian Indigenous societies where art, music, dance, and storytelling are integral to their holistic approach [1], art has played an important role in healthcare.

More recently art therapy has emerged as a hybrid of the disciplines of art and psychology. In 1942 the term ‘art therapy’ was first used by Adrian Hill, a British artist, who was noting the beneficial effects of drawing and painting during his convalescence from tuberculosis [2]. In Canada, art therapy was first seen in the work of Marie Revai (artist, Montreal) and Dr. Martin Fischer (psychiatrist, Toronto), Irene Dewdney (artist, London) and Selwyn Dewdney (artist, London) [3]. From these early innovators, the field of art therapy has continued to develop with the creation of training programs as well as associations supporting practitioners with one of the first, The Canadian Art Therapy Association, being established in 1977 [4]. Today, art therapy is used widely across society, including education, social services (shelters, correctional institutions) as well as healthcare (hospitals, community care, and in private practice). The practice of art therapy has also grown to include art in all of its forms.

The application of arts in healthcare, however, is not limited to therapy. There is neuroscientific research examining the benefit of the arts in brain function [5] as well as studies into the enhancement of well-being through health-based creative arts [6]. Art is also being used in medical and nursing school training to facilitate student’s creative expression and exploration of self-care and also as a medium to develop their understanding of the patient experience. Even medical images such as biopsies and MRI scans are being turned into works art.

Challenges faced by arts in healthcare

Despite this growing presence of the arts in healthcare and recognition of its healing benefits, the practice of the arts in healthcare remains a challenging field. The traditional clinical framework governing healthcare is often at odds with the arts due to differences in values, language, methodology and evaluation. While traditional healthcare practices are supported by quantitative, evidence-based assessment, arts achieve and measure output through qualitative methodologies; this dichotomy can hinder collaboration.

Funding for the arts in healthcare also poses problems. Emerging arts programs must obtain sustained operational funding at a time when hospitals are working to reduce budgets. Funding supporting arts in healthcare is available through various foundations and organizations. However application processes can be lengthy with smaller amounts provided and limited to specific timeframes resulting in no long term funding for continuing programs. Even large established organizations are encountering funding issues – the Arts & Health Alliance, an US-based, non-for-profit organization that has worked to promote the arts in healthcare since 1991 has had to cancel its annual conference this year “due to lack of funding and support.” [7]

#hcsmca and Art Heals Health | Health Heals Art 

A one-day event on October 28th, 2015, Art Heals Health | Health Heals Art invites patients, practitioners and artists to a showcase of artistic projects that have enriched the healthcare and art experience. The day will feature key-note speakers as well as opportunities to meet a diverse group of professionals and engage in experiential arts-based activities. We will explore and celebrate the remarkable work that is happening in health and the arts in Toronto and elsewhere. Our aim is to break open the silos and build bridges among the people who are pioneers in this work so that these innovations will grow exponentially and advance the patient and provider experience.

Open Lab would like to get feedback from the #hcsmca community as we prepare this exciting day. Help us brainstorm a meaningful panel. On June 10 at 1pm ET let’s explore the possibilities in bringing the arts more fully into healthcare, using these questions as our discussion guide.

  • T1: In what areas of the health system could the arts could be used? Examples of where it is already being done?
  • T2: How can social media be used to advance the use of arts in healthcare?
  • T3: What topic would you like to see for the panel discussion at the inaugural AHH-HHA Symposium for which the theme is Conversation?
  •  T4: What other types of organizations do you think would be interested in partnering to help support the arts in healthcare?

References

Chat 223 Summary: Learning Digital Health in School and on the Job

June 4, 2015

By Amy Snow (@ayms219)

When interviewing nursing students and teachers in her native Austria, Michaela Endemann (@MichiEndemann) found quite a range of attitudes towards learning and using information and communications technologies in health from embracing to rejecting them. June 3rd, she turned to #hcsmca to get their thoughts and experiences with Learning Digital Health in School and on the Job.

Read transcript 223 to get all the details. Thank you @ayms219 for preparing this graphic snapshot of the chat.

infographic of chat 223