Skip to content

Next #hcsmca chat

Wed. September 3, 2014 at 1pm ET (2pm AT, noon CT, 11am MT, 10am PT)
hcsmca = Health Care Social Media Canada more info >>

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

August 4, 2014

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

Flipping the panel at #MedX

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

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

August 6 #hcsmca chat

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

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

 

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

July 30, 2014

By Colleen Young (@colleen_young)

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

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

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

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

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

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

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

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

Epilogue

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

Flipping the panel at #MedX

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

#MedXsm

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

References:
[1] Millington R. FeverBee. The Art of Forging Strong Friendships Between Members of Your Community http://www.feverbee.com/2010/12/friendships.html
[2] McMillan DW, Chavis DM. Sense of community: A definition and theory. Journal of Community Psychology 1986;14:6-23. http://mc7290.bgsu.wikispaces.net/file/view/McMillan_1986.pdf
[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/

I #LoveTwitterCommunities

July 27, 2014

I #LoveTwitterCommunities.

The CPSO’s Consultation on Telemedicine: Getting #hcsmca’s feedback on the new draft policy

July 10, 2014

By The College of Physicians and Surgeons of Ontario (@cpso_ca)

The College of Physicians and Surgeons of Ontario (CPSO) recently released a new draft version of its Telemedicine policy for external consultation and is looking to the #hcsmca community to provide feedback on it. The draft policy sets out the CPSO’s expectations of physicians who practise telemedicine. Given the evolution of technology and the increased use of telemedicine in diverse practice settings, the draft policy contains a number of new or revised expectations to ensure it is clear, up-to-date and comprehensive.

Telemedicine-consultation_300x251

The CPSO is committed to ensuring that the draft policy reflects current practice issues, embodies the values and duties of medical professionalism, and is consistent with the CPSO’s mandate to protect the public. But in order to do this, we need to gather opinions and insights from a wide variety of interested parties. That’s where #hcsmca comes in. Since telemedicine falls under the broader topic of information communications technology, we know it is of particular interest to this community – as was demonstrated by a number of telemedicine-related comments that arose during the June 18 discussion “Online vs. In-Person Patient Support Services.”

We welcome any and all comments on our draft Telemedicine policy. You can read the draft policy online and review our Telemedicine consultation page, which includes information about the consultation and how to submit your long form comments.

On Wednesday, July 16th, let’s examine the following topics during the #hcsmca chat:

  • T1: Do you think the same expectations should apply to telemedicine as they would to care provided in-person?
  • T2: If the doc you are seeing via telemedicine is physically located in another province/country, would you want to know?
  • T3: Would you be concerned about the security of your personal health info being transmitted via telemedicine?

Read the transcript of July 16th #hcsmca chat.

Is it finally time for provincially appointed patient advocates?

July 8, 2014

By Colin Hung (@Colin_Hung)

Colin Hung headshot

Colin Hung

Last month, those of us who live in Ontario went to the polls for our third provincial election in just seven years. The results were surprising – Kathleen Wynne’s Liberal party won a majority which none of the experts were predicting (http://www.theglobeandmail.com/news/politics/ontario-election-day/article19135292/). You could almost hear the collective sigh of relief that there won’t be another election for at least four years.

For me, the timing of the election was horrible. In the previous two years both the Minister for Health (The Honorable Deb Matthews @Deb_Matthews) and the Ontario Ombudsman (André Marin – who tweets under the handle @Ont_Ombudsman) had publicly been talking about finally implementing provincial oversight of Ontario’s healthcare institutions through a third party (Toronto Star article Healthcare check-up: Should the province’s ombudsman have oversight of hospitals?). Ontario is the only province in Canada where the scope of the ombudsman does not include hospitals. This means that in Ontario, should there be a complaint or an issue with a hospital, the escalation process only goes through the Ministry of Health – hardly a neutral third party.

This issue was so important our friends over at HealthyDebate even had a series dedicated to this topic – Expert advice for Ontario Ombudsman on his bid for jurisdiction over hospitals and long term care facilities.

When you read the articles it is clear that Matthews and Marin did not see eye-to-eye on who that third party should be. Marin, obviously, believed that the Ombudsman office was perfectly suited to handle hospitals, but Matthews disagreed. Instead she proposed creating a separate body. In January 2014 Matthews’ publicly proposed the following:

“What we’re talking about is a health-focused patient advocate. I get letters as minister from people who aren’t happy with the care they’ve received. I think it’s really important to turn those complaints into ways to improve quality.”

(Source: http://www.theglobeandmail.com/news/politics/ontario-vows-to-introduce-advocates-office-for-health-care-complaints/article16535059/)

Notice that Matthews didn’t use the word Ombudsman but instead chose patient advocate. Her words got me thinking – is it time that provinces in Canada have a designated person/office that is responsible for advocating on behalf of patients?

Currently, each hospital and healthcare organization in Canada has their own patient advocate – usually an individual or small department that handles patient feedback as well as complaints. These “Patient Relations” teams are fairly effective at helping patients resolve issues involving the organization they represent. [Disclosure: I used to work closely with many Patient Relations teams in Ontario in my role of VP Marketing at RL Solutions].

However, the care we receive as citizens of Canada is very rarely handled by a single organization. We have primary care physicians and specialists that we use alongside hospitals. There are also long-term care facilities, CCACs, home-care providers and now telehealth organizations that are also part of the “care team” for many Canadians. In this overlapping, heterogeneous environment it would be very difficult for a patient to know which organization to raise an issue with. Shouldn’t there be someone that patients could escalate issues to who had the ability to see across the entire healthcare continuum?

Furthermore wouldn’t it be nice to have a person (or office) that patients could turn to for help to navigate our increasingly complex healthcare system? To provide the patient perspective whenever and wherever healthcare policies are debated? To fight for patient rights and healthcare privacy? In short, isn’t it time we had a Patient Advocate at the provincial level?

I hope that Ontario’s new incoming Minister for Health – The Honorable Dr. Eric Hoskins (@DrEricHoskins) – carries on the work that Deb Matthews started. Whether or not the Provincial Patient Advocate falls under the Ombudsman or not, it is my personal opinion that this role is needed.

Join us on Wednesday July 9th at 1pm Eastern for the weekly #hcsmca tweetchat where we will be discussing the topic of a Provincial Patient Advocate.

  • T1: Is there a need for a Provincial Patient Advocate? Or is the existing system sufficient?
  • T2: Does patient advocacy and hospital oversight belong in the same place/office?
  • T3: What would a Provincial Patient Advocate be responsible for? What specific duties would they have?
  • T4: What would be the characteristics of a good Provincial Patient Advocate? What background? Knowledge?
  • T5: Do you think we will see a Provincial Patient Advocate in the next 5 years? What’s needed to make this happen?

 

How do people manage without a family doctor?

June 23, 2014

Dr. Wai-Sun “Sunny” Chan is a family physician who recently moved to Canada and set up practice outside of Ottawa. On Wednesday, June 25 at 9 pm ET, Sunny will moderate #hcsmca for the first time to discuss Canada’s shortage of physicians in primary care. What does this have to do with social media? Let’s explore. 

By Dr Wai-Sun Chan (@DrWaiSun)

headshot Dr WaiSun Chan

Dr WaiSun Chan

General practice or family medicine, as it is referred to in North America, is the practice of clinical medicine in the community. Traditionally family physicians are the physicians of first contact for patients, providing primary and continuing care to individuals and families. Family physicians often make the initial decision on medical issues. Sometimes they may take on role of patient advocate and are often key champions in promoting public health and health within the community through their involvement of chronic disease management, cancer screening and vaccination programs. Thus it’s not hard to see why many health systems around the world rely on an effective, organized primary care system with the family physician playing a central role.

It has been estimated that in excess of 4 million people in Canada do not have a family physician. When you consider there are approximately 35 million people living in Canada, then roughly 1 in 10 people are without a family physician. For a highly developed western country this statistic is rather shocking.

People without a family physician are

  • less likely to receive continuity of care
  • less actively to be involved in health promotion activities
  • more likely to receive inadequate care and monitoring of chronic conditions
  • more likely to experience delays in diagnosis

I qualified as a family physician in the United Kingdom over 11 years ago and have worked in both the British National Health Service and Irish health systems. I immigrated to Canada nearly 18 months ago to work as a family physician outside of Ottawa. I had heard much of the problem with the shortages of family physicians prior to my move however seeing the extent of this first hand was quite disturbing. In the first few months of opening my practice I saw elderly patients who had been without a family doctor for many years, families willing to travel over an hour to join my practice and patients residing in another province.

In my experience, family physicians are incredibly busy and patients often have to wait weeks before an appointment becomes available. Wait times to see hospital specialists are amongst the longest in the developed world and emergency departments work under incredible stress and pressure as many people use them as their first port of call for a medical assessment. The situation is far from ideal for everybody.

On Wednesday, June 25 at 9pm ET, I’d like to invite everyone to chat and explore how patients cope without a family physician and what role, if any, social media can play. If so, then how?

  • T1a How do people manage without a family doctor?
  • T2 Is the doctor–patient relationship (a fundamental strength of family medicine) over-rated?
  • T3 Can social media play a role in helping doctors & patients cope with family physician shortage?

 

Online vs. In-Person Patient Support Services

June 15, 2014

Annette McKinnon (@anetto) and Natrice Rese (@NatriceR) have participated in a variety of online and in-person support services for patients, both to give and receive support. Here Annette outlines the topics they will explore this week on #hcsmca Wed. June 18 at 1 pm ET.

By Annette McKinnon 

Annette McKinnon

Annette McKinnon

There are patient organizations for almost every illness. Their purposes include promoting awareness and providing information about the disease. Many also provide support services and help patients and families connect with other people like them. Many patient organizations also advocate for improvements such as better treatment, access to medications and more research funding.

There are patient-led organizations, such as The Sjogren’s Society of Canada, EmanualsSyndrome.org or FMDchat.org and others that were founded by medical professionals, such as the Canadian Diabetes Association, the Canadian Cancer Society or The Arthritis Society.

A major benefit of this type of organization is that you can self-refer, that is, you don’t need a doctor’s referral to get the benefit of education and help from them. I have been a recipient of in-person services from The Arthritis Society. Meeting others with the same issues as mine in self management courses has been invaluable. The advice and help of physiotherapists and occupational therapists is also irreplaceable.

Later I discovered a self management course offered online which is based on research done at Stanford University. Many self management programs owe a debt to this research from the 80’s. It is still going strong and people with chronic illness can enroll in it here Better Choices, Better Health.

picture of people around a table for an inperson service

In-person Support Services

One thing all of the charities have in common is a need for funding to carry on their good work. In times like this when money is scarce and the organizations have to make hard decisions how do they continue to meet the needs and demands of the patients they serve?

Increasingly patient organizations are augmenting their communication and support services with electronic solutions – eNewsletters, webinars, e-learning, video, online communities, chats and other social media platforms. In some cases, organizations have chosen to replace in-person services with online delivery. The internet offers great opportunity but there are limitations to online means of communication. Obviously, if money were no object, offering both online and in-person services would be the perfect solution.

lego person at comupter

Online Support Services

For rare diseases, online is often the only way to connect with others who have the same health issue, but organizations serving more common conditions may be neglecting some segments of their patient group by moving services to online only. Some patients and families have no computers or ability to use them. There are many people in this category including the poor, those with language difficulty or with low literacy. Some prefer not to use online services because of privacy concerns and/or a fear of social media.

On June 18th, #hcsmca will explore the complexities of choosing between online vs. in-person patient support services when organizations can’t afford both.

  • T1: Is it ethical to opt for online only delivery of patient education and services?
  • T2a: What services are better delivered online and which in person and for whom?
  • T2b: Is online delivery of services actually cheaper?
  • T3: Share example of quality and cost-effective online support systems for patients

Additional Reading