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  • Made with patients awards

    This initiative is from my friend and colleague, Eva (Lidewij) Vat who worked in patient engagement with the NL SPOR unit until 2018 when she returned to the Netherlands to do her PhD focusing on patient engagement.

    Please send as many suggestions for the award as you feel you can and pass this information along to your other networks.

    About the award PFMD_Made_With_Patients_Awards_Communication_Toolkit (1).pdf
    The “Made with Patients” Awards, powered by PFMD, is a curated space to celebrate those driving global patient
    engagement in the health ecosystem - including in medicines development, medtech development, and digital health.
    The goal is to celebrate individuals and initiatives that went above and beyond in their effort to put the patient at the
    center of our health ecosystem. Anyone can nominate people and/ or submit initiatives.
    A curated collection of initiatives will also be collected in a new edition of the Book of Good Practices
    Why should I nominate an individual or submit an initiative?
    We need you to help us find the best and brightest people and initiatives in the health ecosystem.
    Anyone in your community can help identify, nominate, vote for, and celebrate the individuals and initiatives moving
    patient engagement forward in the health ecosystem.
    Next steps

    • Nominate an individual

    • Submit an initiative

    • Share the PFMD Award with your network using the ready-to-use email and ready-to-use social media messages.

    Copy-paste the text below and customize it to share with your network. If you require further support, please don’t
    hesitate to contact us at [](link url)].

    Dear ...,
    I hope you are well. It’s my pleasure to introduce you to the “Made with Patients” Awards - an exciting
    opportunity to celebrate and highlight individuals and initiatives that go above and beyond in their effort to put
    the patient at the center of our health ecosystem across the globe.
    Given your extensive experience and knowledge on the subject, I’d like to invite you to nominate an individual or
    submit an initiative. A jury will review all submissions, and an in-person awards ceremony is happening at this
    year’s live Patient Engagement Open Forum.
    You can find out more about it here.
    Thank you in advance! I hope to see your nominations soon.

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • RE: Meaningful Patient Engagement - A Guide for Projects and Committees

    @Sandra-Ketler Thanks for sharing this, Sandra. I noticed it is directed to the people who engage us. I wonder what a guide would look like from the patient and caregiver partner (PCP) perspective?

    How would we direct PCPs to have a meaningful engagement?

    What is our responsibility versus our healthcare partners' responsibility?

    How do we evaluate an opportunity so that we can assess if it will be meaningful or not?

    What do we do if we are on a project and we are not being meaningfully engage?

    Any thoughts?

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • RE: ChatGPT on Patient Partnership

    @Annette-McKinnon Two things: first, yes, we need to define patient partnership better. The terms are evolving which is also going to confuse ChatGPT. We are moving to Patient and Caregiver Partners (PCPs) which more accurately reflects who we are.

    Second, AI is moving rapidly and the attention in the press is gaining momentum. We, as PCPs need to keep up with it certainly as far as it is employed in healthcare. There are huge advantages ... but there can be downsides we need to be aware of like built in bias, unconscious or not.

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • Does anyone know of a PFAC specifically for an ICU?

    Cecile Hallenstein-Bricout works in Guy's and St Thomas's NHS Trust in London, UK. She is a senior staff nurse, working in ICU (intensive care unit), and is currently doing a research internship, where she focuses on the Patient and Family Advisory Council in ICU.

    She would like to ask if any of us are aware of the existence of a Patient and Family advisory council implemented in ICU in Canada.

    If so, is it an initiative that you would encourage hospitals to implement, especially in ICU?
    Which guideline/handbook are being followed?
    What are the impacts of these groups on patients and relatives?

    She has found some valuable documents and studies about such groups implemented in primary care structures and wards in hospitals, but nothing so far in ICU.

    Please respond directly to Cecile at:

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • On digital health, a talk by patient partner Anne O'Riordan

    Our fellow PAN Community member, Anne O'Riordan did a talk at the Canada Health Infoway Partnership conference recently on digital health from a patient perspective.

    Take a listen. She is introduced at 3:12 mins and talks until 10:25 mins.

    Her 2 key priorities are access to our records and ensuring compassion.

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • Who Does What In Canadian Healthcare?

    Watch this informative video explaining the responsibilities of each level of government. There is still much work to be done when it comes to how they should be collaborating with each other to break down systemic inequities.

    Are you seeing solutions? Have you been a part of any working groups that are working with all levels of government to break down systemic inequities with regards to healthcare?

    posted in Education & Self Learning / Éducation et autoapprentissage
  • Taking Back Healthcare - there is momentum for change

    It seems like in spite of, or perhaps because of, all the system breakdowns, lack of staff etc. in healthcare, there is also a growing recognition that we can't keep doing the same old, same old.

    The status quo won't wash.

    This latest report builds on the work of the Pan-Canadian Health Data Strategy.

    Take a look Taking Back Healthcare: the authors are a who's who of Canadian healthcare minds - Dr. Bob Bell, Georgina Black, Jodi Butts, Dr. Vivek Goel, Dr. Alika Lafontaine, Dr. Victoria Lee, David MacNaughton, Dr. Danielle Martin, Dr. Jane Philpott.

    The contents are compelling:

    From Crisis to Renewal
    THREE MODERNIZATION IMPERATIVES 6 What Canadians Should Expect From Our Health System

    • A new definition of access to care that places a performance standard in the hands of people

    • Improving health outcomes, not funding, must drive governance and accountability

    • We can no longer ignore that health is wealth

    It’s Time to Get Serious About Well-Being

    What are your thoughts about this? What role do you see patient partners playing?

    posted in About Public Involvement in Healthcare / Sur la participation du public dans le soins de santé
  • Tackling Bias in Health AI Systems from a Human Rights Lens - free

    Tackling Bias in Health AI Systems from a Human Rights Lens

    Wednesday, January 25th, 2023
    4:00 - 5:30 pm ET


    Jake Okechukwu Effoduh (He/Him)
    Vanier Scholar, Osgoode Hall Law School
    York University

    The healthcare industry is witnessing an era of innovation explosion, part of which is as a result of the increasing use of artificial intelligence (AI) within healthcare contexts. Although the technology is still relatively new, there are already some promising examples of AI systems improving diagnostics, treatment, and the speed of healthcare delivery. For example, some AI systems are remarkably predicting disease outbreaks, cancers, and heart diseases long before any signs or symptoms show. The use of AI is also advancing the practice of telemedicine, medical informatics, and is improving clinical operations (such as interpreting staining images and aiding the performance of high-risk surgeries). Many of these innovations are unprecedented.
    However, one of biggest challenges in the use of AI for healthcare is the issue of bias: instances when the application of an AI algorithm compounds existing inequities in socioeconomic status, race, ethnic background, religion, gender, disability, sexual orientation, or other criteria in ways that could amplify discrimination or adversely impact inequities in health systems. One of the many ways that this phenomenon of bias from AI health systems could occur is when an AI algorithm produces results that are systemically prejudiced due to erroneous assumptions in the machine learning process.
    In this session, I plan to speak on bias in health AI systems. I hope to discuss how AI algorithms can become biased, how they enter systems, and the harmful effects of algorithmic bias in AI for health care. Taking a critical human rights approach, I will also explore the legal and regulatory responses to bias in AI for health purposes.

    The direct link to the seminar will be emailed out to registered participants 2 hours before the event. If you don't receive the link just head over to our YouTube channel and click on the video in the upcoming livestream section.

    posted in Education & Self Learning / Éducation et autoapprentissage
  • Webinar Series: Promoting Health Equity Through Trauma-Informed Practice and Engagement

    Join HEC for two new virtual learning events aimed at promoting patient engagement that is equitable and inclusive.

    Beginning in February, these sessions will help you develop an understanding of trauma-informed approaches that help foster more equitable and inclusive engagement with a broad diversity of people in the health system. Participants will explore practical approaches and instructive case studies, guided by a diverse set of speakers.

    Session 1: Understanding Trauma-Informed Practice & Engagement
    February 7, 2023 (12:00 p.m.-1:00 p.m. ET)
    Learn more about the principles of trauma-informed engagement from people with lived experience of receiving, delivering and leading healthcare.

    Session 2: Trauma and Resiliency Informed Practice in Action
    March 7, 2023 (12:00 p.m.-1:00 p.m. ET)
    Explore how the Fraser Health Authority in British Columbia has developed and implemented trauma and resiliency informed approaches at the individual, team, organizational and systems levels.

    These sessions are part of HEC’s Equity, Diversity and Inclusion Virtual Learning Exchange.

    posted in Education & Self Learning / Éducation et autoapprentissage