Patient-Oriented Research Podcasts

If you are interested in Patient-Oriented Research, why not join Beverley Pomeroy and Lisa Ridgeway for SPORCast? This bi-weekly podcast discusses the Standards for Patient-Oriented Research from the west coast of Canada. To listen to previous podcasts and more, including the conversation with Andre Picard, check out the SPORCast podcast page.

“Let’s Get Real…”

If you are free on Thursday, October 10th from 10 a.m.-11 a.m. MT, you may wish to attend this free webinar. Based on the description of the session, it is going to be time well spent. Register here.

Join patient partners and thought leaders in an engaging panel discussion on the value of patient and family partnerships. Learn first-hand about what works well for partnering with patients and families, what doesn’t and tips for collaborating on your system transformation and organizational quality improvement initiatives. This webinar features panelists who have a range of collaboration experience, including at organizational, health system and policy maker levels.

Good Reminder

If you are interacting with patients, here is something important you might want to remember.

Who Needs to be Transparent?


There is much discussion around the need for transparency in the healthcare sector, with patient advocacy groups being a strong voice in this discussion. However, what about their own transparency?

“Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new database logging 12,000 donations from large publicly traded drugmakers to such organizations….

The database, called “Pre$cription for Power,” shows that donations to patient advocacy groups tallied for 2015 — the most recent full year in which documents required by the Internal Revenue Service were available — dwarfed the total amount the companies spent on federal lobbying. The 14 companies that contributed $116 million to patient advocacy groups reported only about $63 million in lobbying activities that same year.

Click here to read the full article.

Cast Your Vote

Currently, we are seeking your response in terms of how you want your healthcare supported. Please consider casting your vote and letting your voice be heard.

Are You Dancing With Your Healthcare Provider?

In this video, Sarah Krüg uses the analogy of the continuous give and take in the “Tango” to illustrate the foundation of balanced partnership and connection that can exist between patient and physician. Unfortunately, this dance may not be occurring for some patients. As one member of the Patients 4 Change community stated, “To date, there are multiple songs playing at the same time, with each one having a different beat. Suffice it to say, my feet are very sore from being stepped on.” What kind of dance do you share with your healthcare providers?

Highlights from #WMTY17

The global campaign entitled, “What Matters to You” was held on Tuesday, June 6, 2017. In addition to a number of events happening in various locales around the world, there was plenty of action occurring online. In addition to interactive blogs, the Twittersphere saw many #WMTY17-related tweets flying about. Below are just a few of the tweets shared. Thanks to everyone who participated in this campaign. Let’s keep asking the question, “What Matters to You?”


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