Over to you: Include patients in health care conferences?

2013-01-24 Conference

In the spirit of small tests of change, we’re trying a new feature on the Qreview blog. Starting today, and again once each week for the next 6 weeks, we’ll highlight a topic or issue related to health care improvement that’s generating some buzz. It could be drawn from the news media, research, social media — or even something that’s going on right here in Saskatchewan. You’ll get a quick snapshot of the issue, and a relevant excerpt, image, or link. Then we’ll turn things OVER TO YOU.

I follow (and sometimes participate in) a regular tweet chat using the hashtag #hcsmca – Health Care Social Media Canada

On January 9th, the discussion turned to including patients in health care conferences. In general, the consensus on the chat seemed to be that including patients was desirable, but it seemed to be a new topic that many were just wrapping their heads around:
2013-01-24 tweet chat

In February 2012, international advocate for participatory medicine, Lucien Engelen, started the Patients Included Act when he announced via his blog:

I will NO-SHOW on healthcare conferences that do not add patients TO or IN their program or invite them IN the audience also I will no longer speak at NO-SHOW conferences.

Now it’s over to you:

Should patients be included in ALL health care conferences? Why or why not?

Have you attended a health care conference where patients were included? How was it different than a conference without patients?

Why do you think this idea of including patients in conferences is just now ‘taking off’? Or is it?

What did you think of this post? Click below and let us know.

, , , ,

10 Responses to “Over to you: Include patients in health care conferences?”

  1. Kate
    January 31, 2013 at 5:13 am #

    I started off as a patient, then became the parent of two patients, and now work in a health care setting supporting families through their hospitalization, and supporting our staff as we work to deliver patient and family centred care. We cannot solve any of our most pressing issues in health care without collaboration with patients and families. When those voices are excluded, we end up with solutions that don’t really solve the problems, are impractical, or create unnecessary burdens and barriers. I think some health care workers (used to data and process) don’t like the idea of inviting patients in without a clear understanding of what the role is going to be. That often ends up with patients being token presences at the table. If we in health care can issue the invitation without a rigid agenda, and give patients and families supported opportunities to engage as full participants, then we will see transformation.

    • Jade Gulash
      Jade Gulash
      January 31, 2013 at 8:20 am #

      Kate, it’s obvious you’ve taken some time to think about this, which I appreciate. Thanks for providing us with something to really think about. What you said about “patients being token presences at the table” really resonates with me – I’ve seen this happen. How do we get past this? I didn’t miss that you said “supported opportunities” – allowing the space and time isn’t enough. What do we need to do to ensure that patients are truly heard, involved and able to influence change?

  2. Anne Dooley
    January 25, 2013 at 1:39 pm #

    Of course patients should attend! And they should actively participate in health conferences of all types whether local, provincial or federal. Individuals affected by decisions should help make those decisions. Good decisions are the result of input from and discussion among relevant stakeholders all of whom have different information, experience and perspective on an issue. Patients are important health care stakeholders. We are often seen merely as tellers of our ‘stories’. This is valuable as it helps others understand the effect of having a disease/condition or the experience of dealing with the health care system. But the value goes well beyond this. Patients are rarely ‘just patients’. Those of us who chose to become involved are all ages, some educated professionals, some with unique life experience, and some with special expertise. All of us are concerned and willing to volunteer our various knowledge as well as the experience we’ve often learned the hard way. The fact is, the absence of patients at health related conferences limits the value of the conference. If ‘patient centered health care’ is to be effective, then patients must participate at conferences at all decision-making levels, local, provincial and federal.

    Many patients have been attending, actively participating and presenting at these health conferences for years. This isn’t a new idea. I’ve been a participant and presenter at disease specific, research, research ethics, and health policy conferences since the late 1990s.

    • Jade Gulash
      Jade Gulash
      January 29, 2013 at 10:19 am #

      Insightful and thoughtful, Anne. Thank you. And now that I have the opportunity to speak to someone who has represented patients at conference for years, I have to ask, “How can we do better?” And since patients have obviously been part of health care conferences for years, why is it that some people still seem to think that this is a new idea?

  3. Dave Wells
    January 25, 2013 at 12:04 pm #

    I have been a “patient participant” at many health care conferences. In particular the annual “Taming of the Queue” conference each spring in Ottawa, sponsored by the CMA, which I have attended for each of the past 7 years. This year I was asked to join the steering committee for this conference – one of the reasons being that the organizers would like to increase patient participation. I do not see ANY downside to having us there, speaking, listening, commenting.

  4. Maureen Klenk RN(NP)
    January 25, 2013 at 10:02 am #

    Of course the patient should be part of every case conference. How can we have ‘patient centred care’ if they are left of the room when discussing their care.

    Including the patient in their care will require a learning curve for both the patient and the providers. Sadly, patients are not used to being asked about their care and have become passive reciepents – therefore they will need assistance to feel comfortable at voicing their thoughts/ concern.

    And providers will need to change their messaging and tone. Providers can start by assessing patients by saying phrases such as – “what do you think is causing your…..”. or I believe ……should be your treatment, do you agree with this treatment and do you think you can manage this at home?

    Providers will need to closely listen to patients both verbally and through body language. A patient may not always tell us outright they do not agree, but closely observing body language can often lead to further questioning. It is important to take the time to ask the needed questions to ensure the patients feels in control of their own health care.

    Heath care ‘providers’ need to morph into ‘heath care facilitators”!

    • Greg Basky
      Greg Basky
      January 25, 2013 at 10:18 am #

      Hi Maureen – Greg here at HQC. I’ll provide one point of clarification, then get the heck out of the way 🙂 The conferences Jade’s referring to in her posts are the large meetings/gatherings (for example, SK’s Quality Summit coming up in April http://www.qualitysummit.ca) which have typically been organized and attended by the people who manage and deliver care — but not necessarily the people who receive care. As opposed to the case conferences you refer to, which as you note absolutely must include patients and their families.

  5. Sheri
    January 25, 2013 at 9:56 am #

    I think patients should have the option to attend health care conferences. I know there is a bit of talk from HCPs about the learning curve, and worries that patients may not understand conference content. However, patients are much smarter than we think. The more knowledge a patient has, the better they can practise self-managed care. If not for them, then for a family member perhaps. Allowing pts to attend conferences is one more positive step in helping them to help themselves. I say let’s do it.

  6. Jayne Whyte
    January 24, 2013 at 5:13 pm #

    People in the the disAbility movement have long had the slogan, “Nothing about us without us.” For many years, I have attended events as a “consumer” person who uses the mental health system. Hearing the “patient voice” goes in and out of fashion. Sometimes we are angry, challenging the status quo that has injured or ignored us. As we are heard and validated, we are eager to join as problem SOLVERS, not problems. Involving “patients” means “being patient” as we tell our story. Helping to connect the individual stories to the main themes sometimes requires facilitator skill, and occasionally a “time out” intervention where one or more support persons hear the person’s story and help strategize a way to make the point more concisely and clearly in the larger group Workshop sre NOT really “partnerships” and “collaboration” that do not include the consumer voice. We need consumer/ patient groups that allow people to share their stories with peers and provide support groups for people who chose to become spokespersons based on their experiential knowledge.

    • Jade Gulash
      Jade Gulash
      January 29, 2013 at 10:23 am #

      Jayne, your comment has really got me thinking. You are obviously passionate about this topic and I’d love to hear more about your experiences. We are currently organizing the 2013 Saskatchewan Health Care Quality Summit and planning patient participation in a number of different ways, but I want to know from you – any warnings? What should we definitely NOT do? And what could we try instead?

Leave a Reply

Share your opinions and questions about this post. We welcome different points of view; but ask that you be respectful and constructive.  Your comments will be moderated before they appear on the site. Your Email address will be kept private.