Category Archives: Patient Voice

Quality Summit 2017 – Elephant in the Room

Posted on by


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

Research over People?

Posted on by

Living with a chronic condition can result in a number of challenges, including alienation, isolation and loneliness. Oft times, these factors can be more problematic than the condition itself. 

Fortunately, there are disease-related organizations that can assist individuals with their illness as well as other the challenges, such as those noted above. Sadly, some of these organizations are forfeiting these services in pursuit of a “cure.” As such, the person with the disease is becoming secondary to the disease itself. Click here to read what individuals with MS are facing.

Get Involved – Discussion Groups

Posted on by

Do you reside in Alberta? Have you or a person whom you are a caregiver for been diagnosed with sleep apnea? If you answered “Yes” to the above questions, here is an opportunity you may find of interest.

The Sleep Disorders Working Group of the AHS Respiratory Health Strategic Clinical NetworkTM (RHSCNTM) in conjunction with the University of Calgary and University of Alberta, will be hosting discussion groups for sleep disordered breathing (SDB). The purpose of these discussions is to develop a model of care that will improve the way patients with SDB receive care.

To obtain more information about how you can participate in these discussion groups, please email respiratoryhealth.scn@ahs.ca, call 1-866-668-8308 or click on the following links to view the associated posters.

Get Involved – Healthcare 101

Posted on by

There is an exciting initiative underway in Alberta. If you are interested in healthcare, you will definitely want to read Patty’s announcement below.

HEALTHCARE 101 PROJECT:
“The project will co-design with the public content relevant and meaningful to Alberta citizens to inform them on how the healthcare ecosystem works. The project will identify content and pilot test one foundational content by May 31st , 2016. We are doing this to help AB citizens experience the health care ecosystem in a positive way”

If you are interested to be involved or participate in this exciting opportunity, please see the invitation and respond to the contacts provided below.
Patty Wickson at patty.wickson@ahs.ca or (403)629-2139 – South of Edmonton
Rhonda Shea at Rhonda.Shea@hqca.ca or (780)974-3414 – North of Edmonton

Do Buildings Have Rights?

Posted on by

If you have been following the assisted dying discussion that is happening in Canada, you know that some patients have been denied medically assisted dying. The reason for this was not because the individuals failed to meet the necessary legal requirements, but because the hospitals/care facilities in which they found themselves would not provide the services to carry out the patients’ wishes.

In a recent article, André Picard argues that hospitals have no right to refuse a patient assisted dying. As he poignantly states:

It is reasonable for individual physicians and nurses to declare a conscientious objection and not participate in assisted death. But a hospital or nursing home has no such right. Publicly funded institutions cannot arbitrarily decide what services they will provide, nor should they be able to shunt dying patients around like sacks of rice.

Click here to read the full article.

Updates on Family Presence Work

Posted on by

Hello Pts4Chg Community!

Over the last four months the materials for patients and families as partners and advisors have been refined a wee bit and are also now translated into French. Our small ‘collation of the willing’ (volunteer citizens, patient and family advisors and CFHI) also thought it important to also create a survey to help improve the materials upon use. I know that many of you provided feedback already (which I still have) and some of that has made it into the current version. Much of it has not though, as we needed to find a way to capture input that would likely also come in nationally. So please complete the two short surveys if you have time, so that your impressions on the info can be included when next edits are made, likely well into 2017.

If you are active on Twitter, here are some suggested hashtags for the overall Better Together campaign too, that this is part of, if you are tweeting this info out.

  • #MoreThanAVisitor
  • #Cdnhealth
  • #shoulder2shoulder
  • #familypresence

These two documents are designed to support the movement for Family Presence in healthcare.

1. The first document, Partner Tips, is intended to be used by patients and families at the point of care (e.g. at the bedside, in an office or clinic).

2. The second document, Conversation Tips, is intended to be a resource for patients and families in conversations with healthcare providers, or organizations, or communities.

Please feel free to download, copy, distribute and use these documents. You will need Adobe Reader on your device. You are welcome to adapt them to meet your local team’s needs.

These tips sheets are also available in French: http://www.fcass-cfhi.ca/WhatWeDo/better-together/resources

Want to have your say and Be part of the pilot for these documents!?

The volunteers with ‘IMAGINE CITIZENS Collaborating for Health’ would appreciate your feedback and comments about these two documents. Please click these links to complete the two surveys about each document:

1. “Partner” Tips Survey and
2. “Conversation” Tips Survey.

Comments received will be reviewed by IMAGINE CITIZENS’ volunteers so that any significant edits can be incorporated. New versions will be available periodically, every six months or so, through the partner organizations.

Thank you for your help!

Troy Stooke
volunteer
IMAGINE: Citizens Collaborating for Health & Member of Pts4Chg community

Pts4Chg Fishbowl – Thanks and Themes

Posted on by

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

Have Your Say

Posted on by

A member of the Patients 4 Change (Pts4Chg) community drew our attention to this important survey by posting the following. Thanks, Mike.

“This survey is being complied by Employment and Social Development regarding employment and people with unpredictable episodic conditions.

episodic-disability-survey

Click here or on the image above to go directly to the survey.

Please participate if you feel you qualify.”

Patient First?

Posted on by

patient-x-art
“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.

Get Involved!

Posted on by

Are you interested in promoting and improving the safety and quality of Alberta’s healthcare system? Do you want to see changes in this area? If so, the Health Quality Council of Alberta is looking for volunteers to join its Patient/Family Advisory Panel. Click here for more information.