Feed the Elephant


In an earlier post, readers were invited to share any ideas they had concerning potential topics for the upcoming 2017 Quality Summit. Karla W. was one person who accepted this open invitation. Below is what she wrote.

“Over the past several years of [my] experience as a patient representative/advisor, the issue of remuneration for time spent as a “volunteer” has surfaced [during] discussions at the tables. Nationally, and provincially, it varies greatly (from zero – up) how organizations acknowledge patient advisors, as well [as how] different people on the same committees are acknowledged differently. I would like to encourage a discussion on this topic.”

Why not be like Karla and “feed” the elephant?

Quality Summit 2017 – Elephant in the Room


Planning for the upcoming Quality Summit 2017 is underway. To this end, members of the Patients 4 Change (Pts4Chg) community were asked to provide their thoughts on what they would like to see at the summit. During a recent Pts4Chg community telephone chat, which focused on the Quality Summit 2017, one of the key ideas raised was the need to talk about the “elephant in the room,” as it relates to partnering with Patient/Family Advisors.

While it is true that these topics may be difficult to raise and cause some angst and discomfort when discussed, by pretending that such issues do not exist and hence failing to address the elephant in the room, genuine collaboration and engagement with advisors is not apt to occur.

Below are some of parts of the elephant the Pts4Chg community identified.

  • Devaluing advisors
  • Fear of including advisors
  • Wasting advisors’ time energy and experience
  • Exploitation versus engagement – When does inclusion become exploitation?
  • Partnership versus Tokenism
  • Ignoring advisors

Click here to read more from the recent Pts4Chg conversation. If you have any ideas, suggestions or comments pertaining the following four areas, you are welcome to reply as a response to this post.

  1. What advisor-related topics would you like to see included at the Summit?
  2. What speakers would you like to have as part of the advisors’ sessions?
  3. What format would you like to see for the advisors sessions? For example, formal presentation, workshops, breakout session, etc.?
  4. Other Comments

“Patient Included”…or Not

It is becoming more common for patients to be invited to medical-related conferences. However, in an open letter to “Patients Included” conferences, Carolyn Thomas points out why many of these invitations are problematic.

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on embracing the increasingly important “Patients Included” movement sweeping through medical conferences.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:

Click here to continue reading Thomas’ letter.

Is Patient Engagement Tokenism?


Patient engagement is a term that is commonly used in the healthcare sector. However, what does patient engagement mean? Does patient engagement mean sitting on a committee and doing nothing more than rubber stamping decisions that were made elsewhere? Is patient engagement mere tokenism?  If not, what is patient engagement and how is it promoted, facilitated and supported?

In the article, “Beyond tokenism: How hospitals are getting more out of patient engagement,” Wendy Glauser, Michelle Satsiuk and Debra Bournes explore these and other ideas.