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Patient partner reflections from e-Health 2024

As patient partners from across this land, we acknowledge that we live, work, meet and travel on the traditional territories of Indigenous Peoples that have cared for this land, now called Canada, since time immemorial. These lands are either subject to First Nations self-government under modern treaty, unceded and un-surrendered territories, or traditional territories from which First Nations, Métis and Inuit Peoples have been displaced.

Introduction

This post is a compilation of reflections from Patient Partners who attended e-Health 2024 in Vancouver from May 26 – 28, 2024.

We have prepared these reflections to illustrate the benefits of including patient partners, present some of our takeaways from the conference, and suggest ways in which future programs could strengthen its patient/caregiver engagement.

We want to thank the conference hosts, Digital Health Canada, Canadian Institute for Health Information (CIHI) and Canada Health Infoway for their sponsorship. In particular, we are grateful to Danielle McKnight (Digital Health Canada), Maria Zaccaria Cho (CIHI) and Morenikle Akinyemi (Canada Health Infoway) for making us feel welcome and responding to every request. Your presence, warmth and willingness to help was very much appreciated.

For many of us, this was the first e-Health conference. The conference itself was well organized, the venue was excellent and hotel staff were responsive and professional. The size was quite good, although places to sit for lunch were at a premium and some of the sessions were over subscribed. The Whova app was very useful for agenda organization and contacting other delegates, although acquiring contact information from some participants (particularly patient partners) was a little challenging.
The conference was expertly hosted by retired freelance journalist Avis Favaro, making the event even more enjoyable.

I was grateful to be sponsored to attend the conference where I met patient partners and so many others from across Canada who are all passionate about the same things. – Sandy Kettler

Themes

Our takeaways can be organized into five distinct themes:

1. Networking

Networking with our patient partner colleagues and with the broader digital health community was an experience that we all valued above all. We met frequently under the banner “The Patient Is In”, an open and welcoming space alongside the three host organizations. While this made it easy for all of us as patient partners to connect, our aim was to encourage attendees to gather there as well to learn and pose questions about patient partnership.

We reconnected with people we knew from pre-pandemic times and met many we had worked with virtually for years for the first time. The energy, life experiences and work of these amazing people was inspiring and rich with opportunities for the future. Opportunities to meet more individuals from the healthcare system were invaluable. The conversations with providers were insightful and contributed to our understanding of the state of healthcare in Canada. Vendors, however, were not quite sure how to interact with us.

Patient Partners…You were the pinnacle of the conference for me. Getting to know you, and what motivates you, to tirelessly do what each of you do on an ongoing basis fed my soul and re-fueled my own tank for the year to come. I saw you, I heard you, and I applaud you. I can say without a shadow of a doubt that you inspired at least 1 person at this event to do better, to do more, following the event. – Shauna Almas

It is fabulous that there were 8 sponsored patient partners at the event! There were also patient partners who were there either under their own steam (myself included) or in other ways. It would be great to connect us all, prior to the conference, so we can then connect at the conference. This for me was one of the best parts, was meeting new patient partners, or meeting some I knew online for the first time in person – Yay! – Claire Snyman

2. Plenary Speakers/Sessions

We were pleased that patient partners were included in several plenary sessions and felt that this added an important perspective to the panels and keynotes.
Sue Robbins, healthcare activist and author, (https://www.suerobins.com/) joined the panelists in the plenary session, bringing her personal lens as a caregiver and cancer patient to the discussion of artificial intelligence. She did a great job of reminding the panel and audience to keep the humanity in AI and focus on ethical and equity issues. Sue Robins shared her view as a patient/caregiver which humanized the remarks and kept the focus where it should be, on patients, their outcomes and experiences.

I noted that plenaries that included the patient voice were very effective. Sue Robins hit it out of the park on the AI panel. She did a great job of reminding the panel and audience to keep the humanity in AI and focus on ethical and equity issues. – Rob Wells

The closing keynote speaker was Tamara Taggart, broadcaster and disability advocate, (ABOUT — Tamara Taggart) sharing her journey as a mother of a child with Down Syndrome and a cancer survivor. Tamera Taggert’s keynote illustrated the need to identify and remove bias (conscious and unconscious) from the system. In particular, a takeaway from this excellent session was that “words matter” and providers must pay attention to their words and actions when providing care. By sharing her personal journey, Tamara inspired many of us to create a positive change in healthcare. It was too bad that more did not attend the closing plenary.

It was refreshing to hear Dr. Kathleen Ross position technology as a tool to assist healthcare providers. This was a recurring theme throughout the conference. Dr. Ross also acknowledged that a cultural shift from doctor-centred to team-centred was required to address the current crisis in Canada.

Dr. Kathleen Ross was truly inspiring. She discussed the importance of providing quality care for all, highlighting the critical need for new tools to combat provider burnout and improve patient access to care. Dr. Ross emphasized the necessity of digital health solutions to facilitate patient-centered care and the importance of patient data accessibility. Her stories and insights reinforced the need for a cultural shift and technological advancements in healthcare. – Jenna Kedy

3. AI/Digital Technology

In the plenary sessions we heard that connected care and AI will increase efficiency, but that this freed provider time should be used for more face-to-face care and the human touch needed for healing. We need to keep humanity in healthcare delivery. With the complexities of care and the challenges of our health care system to do things differently, the use of digital health and artificial intelligence is crucial to the efficiency and cost effectiveness.

One of the biggest questions now being asked relates to the ethical implications of the use of digital health and artificial intelligence. How are patients, family, community members being informed about the use of AI? In the technical sessions we were reassured that the processes for increased interoperability, data sharing, security and AI are being developed thoughtfully, with access to the EHR for all patients and providers coming soon.

An outstanding question is how do science, and humanity come together in our health care system. When and how are patients and community members kept informed or invited to give consent to the use of these technologies?

The need for a cultural shift towards more patient-centered care, coupled with technological advancements, was a recurring theme. Embracing these changes is essential for creating a healthcare system that prioritizes patient needs and leverages technology to enhance care delivery.

Digital health and artificial intelligence in the many applications to healthcare, design, and delivery continue to grow beyond all expectations. We as patient, family, caregiver, as recipients of care have come to an awareness of the impact this has on our lives, how healthcare is delivered to us and how we receive our health care. Our emotions run from completely in awe, on occasion terrified, to at times completely unaware of how or why these applications have impacted and interfaced with our health care experience. – Brenda Andreas

4. Patient Partner Involvement

We were pleased to be invited to participate in the conference by co-presenting and moderating sessions and would encourage further, deeper involvement by patient partners. We have offered up some suggestions for this increased involvement later in this post. As panel speakers, session moderators and conference attendees, and by engaging with clinicians, other patient partners, and delegates, we were provided a unique opportunity to advocate for better patient engagement in healthcare.

It was clear however, that this conference went beyond ‘ticking the box’ for patient inclusion. We congratulate the organizers for this purposeful desire to integrate patient engagement into the conference proceedings and encourage them to continue to strengthen this voice.

I had the opportunity to co-present about an e-toolkit for patients and caregivers aimed at enhancing compassion in digital care, having worked with the lead researcher for the past 2 years. I was delighted to model patient engagement in this way, and I hope next year brings more patient partners to the podium. As one of the moderators on the second day, I had an opportunity to learn more about digital home monitoring and the Hospital at Home concept and to meet the clinicians and researchers involved from British Columbia and Ontario. – Anne O’Riordan

5. Diversity, Inclusion, Equity

It was encouraging to see an entire theme dedicated to digital equity. Digital health has the potential to reduce inequities and increase access to care for the most marginalized. Still, it is crucial to use an equity lens to ensure that solutions truly promote equity and do not inadvertently exacerbate existing disparities while simultaneously creating new ones. As such, this topic must be at the forefront, embedded in all aspects of any project, and start at the outset.

This conference showcased excellent work in this area, such as on-demand video remote interpreting (VRI) to overcome language and communication barriers, ‘talking stick’ an anonymous peer support platform for and by Indigenous people Talking Stick | You talk, We listen. (northernapps.com), the development of pan-Canadian gender, sex and sexual orientation health data standards and the use of design thinking to address the privacy paradox and patient consent in the use of digital health tools. These efforts, made by or in close collaboration with marginalized communities, are crucial in making digital health more inclusive and equitable.

However, there is still much work to be done in healthcare and mainstream healthcare organizations. It is hoped that future conferences will include more sessions and projects focusing on specific communities (e.g., Black Health, LGBTQ2S+, physical disabilities) and ensure that other projects consistently include a digital equity component and embed equity frameworks (e.g., digital health HEIA).

As a racialized person with various intersectional identities, I am committed to creating and seizing opportunities to amplify the voices of the most marginalized communities. I passionately advocate for a more inclusive, diverse, and equitable healthcare system. While there is still work to be done, especially as we navigate the complexities of digital health, the dedicated efforts of many give me hope for meaningful change. – Linda Hanane Mouhamou

Building on Successes

As our collective feedback from e-Health 2024 was highly favourable, we are eager to collaborate with the digital health community to share our ideas for the future. Our suggestions relate to the three interrelated areas of attendance, awareness, and participation.

1. Many delegates, including vendors and even some health care professionals, seemed unaware or confused by our presence. Calls for abstracts and booth reservations could be accompanied by a brief explanation of patient partners, how our contributions add value to the conference, and the opportunity to support our attendance through sponsorship. Quotes from past conference delegates could attest to this benefit. The blog posts, authored by a few of the patient partners and included on the e-Health website in advance of the conference, could be expanded to heighten awareness of our role and contributions.
2. This year’s plenaries and presentations were enhanced by patient panelists and co-presenters, with our stories often leaving the strongest impression on delegates. A panel presentation on conference themes by patient partners from diverse communities would be a welcome addition. As many grants encourage patient partnership in the research process and budget, the inclusion of patient partners as co-presenters could be added to the abstract criteria for other presentations.
3. To increase patient partner participation, it was suggested that a vendor surcharge of 5 – 10% be considered to create a bursary fund. Formal collaborations with Canadian patient communities may also enhance patient engagement.
4. We all loved having a visible gathering space for patient partners under the sign “The Patient Is In”. Its location, adjacent to the three conference hosts, spoke to the importance placed on our presence. A larger space, with a similar backdrop, would improve visibility and allow more delegates to join us to learn and ask questions. Highlighting this opportunity early in conference announcements and agenda overviews would boost this engagement. Our presence and meeting place could be included in the ‘housekeeping announcements’ from the podium, with a slide of our photos and names to increase recognition and encourage contact at the patient space and throughout the conference venue.
5. Early interactions among the patient partnership group would enable us to collaborate more effectively to strategize how best to achieve all three goals of increased attendance, awareness and participation.
6. The diversity of our patient group continues to progress, and we encourage the development of a strategy in collaboration with EDI professionals and various marginalized communities to improve outreach and recruitment of patient partners, panelists, and abstracts to not only increase representation but also expand digital health topics focused on these communities.

Patient partners bring our collective wisdom and lived experience to the eHealth conference, with our engagement now a welcome and expected element of the event. For patients and caregivers, healthcare providers and organizations, vendors and innovators, this is a winning combination. We look forward to continued collaboration as we build a better health care system together. Onward to e-Health 2025!