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

Canada Offers A Healing Hand

In the wake of President Trump’s recent travel ban, which prohibits individuals from seven countries from entering the United States, Canada has extended a helping hand. In particular, recognizing that some of these banned individuals are children requiring medical attention, these children may be obtaining the treatment they require in Canada. 

As Eric Hoskins, Ontario’s Health Minister, states:

“Canada is a country that has always looked into ways it could reach out and support vulnerable people around the world.”
(Canada Will Offer Healthcare To Critically Ill Children Affected By Trump’s Muslim Ban)

Pts4Chg Fishbowl – Thanks and Themes

On October 17th, Patients 4 Change (Pts4Chg) hosted a Fishbowl event as part of Alberta Health Services’ Patient & Family Centred Care week. The fishbowl format was chosen as it encourages a genuine dialogue and conversation, rather than a panel-like, prepared presentation. Eight individuals volunteered to be fish in the bowl and were the key conversationalists for the event. Members of the audience “jumped” in and out of the bowl to ask questions and make comments. 

Although fishbowls are typically held in person, the Pts4Chg fishbowl was held virtually. Unfortunately, technical problems that started in the morning and continued throughout the day saw our virtual fishbowl experiencing a few unexpected challenges. Nevertheless, despite the “rough waters” that were present, a very lively, open, and honest discussion ensued around the following questions:

1. What does partnering with patients and families look like to you?
2. How do you build rapport and grow relationships in health care that make for effective and equitable partnerships?
3. What are some of the current barriers to partnership? How could these barriers be removed or minimized?

Click here to find out what themes arose from the Pts4Chg fishbowl. (Thanks, Sandi, for helping to create this document.)

Based on the feedback received, the Pts4Chg fishbowl was a very successful and worthwhile event. This, however, would not have been possible without an active audience, and our amazing school of fish – Debbie, Mike, Aaron, Sandi, Philip, Terry, Jane and Kristina. Thanks so much!

Richard and Tracy

Patient First?

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“Patient first” is a term that is often used in the health-care sector. However, are we first and foremost patients? Is that how we see ourselves?

According to Dr. Jordan Asher, he sees his patients differently. To him, he sees them as people first. “[I]n order for you to have a better health status, which includes healthcare, I need to think about you as a human being…We don’t look at people as diabetics; we look at them as people that have a bunch of life issues that happen to have diabetes.” How does this philosophy influence the manner in which Dr. Asher works with his patients? Click here to find out.

Thank You

Thank you to everyone who joined us in the Fishbowl last night. What a great time and and an interesting conversation! Special thanks to our fish – Debbie, Mike, Aaron, Sandi, Philip, Terry, Jane and Kristina. You were super! Thanks also to Richard. Your efforts in bringing this event about were not overlooked and were much appreciated. Thanks so much! Tracyweb-fish-thank-you-front