What happened in Patient Engagement this year?

[Annette McKinnon]

Were there any high points for you, or a team you're on? Maybe PAN could tweet some of the high points for the end of the year.
The round ups we see at year end have always appealed to me, so would like to hear, even if only in the group site.

It can be a lead up to changes in our website (planned and getting ready to unveil)

Annette

[Alies Maybee]

What a great idea, Annette! I think it is so positive to share our best experiences from this last year especially in these dark days. I will start:

I am on the Expert Advisory Group for the Pan-Canadian Health Data Strategy as one of about 20 of us. I am the only patient partner among some great and experienced people in law, statistics, global trends, regulation, clinical practice and on. I have always been treated as an equal on the team as we wrestle to outline a way forward for the future of healthcare in a more digital environment one where appropriate sharing of data is the norm both for individual health and for population health (think pandemic management).

• We need to move from policies for an analogue or paper era to one where digital is prevalent.
• We need to recognize there are harms from NOT sharing as well as from privacy breaches.
• We need jurisdictional cooperation so that these boundaries do not cause harm to Canadians receiving care in more than one province/territory.
• We need to make sure we do not create a bigger digital divide and support those who cannot or will not want to engage digitally.
• Above all, we need to move from a provider-centric data system to a person-centric system - one record per person that all providers that need to can contribute to - not a record per provider

My involvement in this work is the most fulfilling of my years as a patient partner and has the opportunity of helping to lay the groundwork for a much better healthcare future. In spite of our current situation in the depths of COVID, I am optimistic although we will still struggle to come through this, especially with the toll on healthcare workers and subsequent effects on patients and caregivers.

Our work continues to be important. Looking forward to hearing about other experiences where you have made or are making a difference.

[Toby Stewart]

Alies; I agree 100% with your points above -- especially the final point about the data should be ours -- and we can take it all with us whenever we need to seek any kind of provider. Please Stay Well and Happy New Year! Toby

[Alies Maybee]

John, the cost depends on how this is done. There is no need to change the individual MDs systems though some changes will probably be needed by the vendors as upgrades to the systems to bring them in line with a form of virtual integration. I would argue the cost to the system for repeated tests, lack of data sharing on a timely basis resulting in poorer health and the need for more costly treatment etc. are the costs on the other side of the argument -- if we talk only money.

Going to a person-centric system starts to allow for higher quality health services, integrated care beyond what the current model can allow, and overall better health for the population. It certainly would allow for better public health planning and management. These would result over time in cost saving to the system. In any event, not doing this will continue to put stress on providers and make their job difficult. I have a clinician colleague who is a strong proponent of this approach and feels it would greatly enhance the ability of practitioners to provide quality care in a way that the system prevents now.

The group I am involved in sees the biggest obstacle as political will. Right now Ontario is undergoing a costly system change. Provinces change things up all the time but mostly these changes shift between centralizing and decentralizing. I would much rather see those monies invested in person-centred systems.

We shall see. Healthcare is under such strain especially now with COVID, who knows how the decision-makers will go.

[Alies Maybee]

I had the privilege to co-author an op ed which appeared in the Winnipeg Free Press in Dec. How Canada’s health “data gap” harms everyone (quoimedia.com)

The 2 reports from the Expert Advisory Group for the Pan-Canadian Health Data Strategy are published already with a 3rd to come after March sometime.
Expert Advisory Group Report 1: Charting a Path toward Ambition - Canada.ca
Expert Advisory Group Report 2: Building Canada’s Health Data Foundation - Canada.ca

[John Shaw]

• We need jurisdictional cooperation so that these boundaries do not cause harm to Canadians receiving care in more than one province/territory.

and

• Above all, we need to move from a provider-centric data system to a person-centric system - one record per person that all providers that need to can contribute to - not a record per provider

Nice but the dollar cost will be enormous and I suspect well beyond the already strained budgets/deficits of both the provinces and the federal governments. Last year I saw some figures for individual provinces implementing one record per person in the province and they were staggering. It is not just the provincially run health authorities that have to be brought into such a system but the thousands of MDs who have invested in a myriad of incompatible systems. That on top of the political problems getting the provinces, who are responsible for health, to agree on a uniform system does not give me hope for a solution any time soon.

[John Sherber]

| Patient.Experience@viha.ca The Experience Team
Tuesday, July 27, 2021 |
| |
| ​_The following article is co-authored by John Sherber, Patient Partner and the Experience team at Island Health._ Here is one example of how a Patient Partner is volunteering with health care team members to impact change and improve quality of care for patients and families within Island Health. John Sherber, right, started participating with Island Health as a Patient Partner back in 2014 by signing up with the Patient Voices Network (learn more about Patient Partners and how the Patient Voices Network works). Over these past six years he has added a strong patient and family voice to projects, programs and councils within Island Health, including patient-oriented research, quality and safety, patient flow, pharmacy, medicine, planning, ethics, mobility planning, home support transitions, interviews for executives, video production, and Patient Partner education. John is one of many volunteers that participate within various projects and programs across the Island. Broad participation allows him to make important connections and share information between groups. Patient Partners add a powerful voice to discussions and decision-making processes within Island Health. “As a Patient Partner I 'enhance' what Island Health employees contribute to our health care system on a daily basis, by contributing a patient or family member perspective" He feels especially proud of his participation when Island Health leaders welcome him with open arms and listen deeply to his experiences and perspective.
More recently, John has been supporting his wife through her breast cancer experience and this has given him many insights on how to improve the cancer journey for other patients and family members. He now also partners with the BC Cancer Agency and has met with 4th year students to help them understand his wife's medication journey. This important sharing of his wife's lived experience may help these students to develop a deeper understanding and improve quality care in the future. Through his experiences as a Patient Partner and family member, John has also developed a passion for patient activation. Patient activation is defined as an individual's knowledge, skills, and confidence for managing their own health and health care. Typically a patient's level of activation can land on a spectrum ranging from feeling disengaged and overwhelmed, ie. “My physician is in charge of my health" through to actively participating_, ie. “I'm my own advocate"._ See Patient Activation Measure for more information. Due to our growing number of seniors and the increased costs on our health care system, John hopes people of all ages are taking more responsibility for being and staying healthy, being involved in their own health and health care, as well as being involved in the development and improvement of our health care programs and services. He hopes that everyone sees their role in shaping future healthcare for themselves and their family members. To support patient activation, John encourages health care team members to invite Patient Partners to participate on any projects that can benefit from a patient or family member perspective; or to participate in What Matters to You, any day of the year. Island Health would like to gratefully acknowledge and thank John and the many Patient Partners that invest their wisdom and energy, volunteer their time, and commit to supporting our communities and making our health care system the best it can be for patients and families!

[Alies Maybee]

John, thanks for the article detailing what you have been and are doing in BC.
I agree that we all need to learn how to be better and more knowledgeable patients and caregivers, I certainly do.