1. Patient Voices Network
What did we learn?
Susan Morrow, May 2016

2. Content
History
Description and Role
Organization
Learning

3. “Public Engagement – processes by which individuals, groups and organizations have an opportunity to participate in decision-making that affects their lives” Public Health Agency of Canada (PHAC)
Using public engagement principles, strategies, processes.
In BC 2007 Primary Health Care charter
2008 Auditor-General report on public participation
2009 – PVN established by ImpactBC on behalf of the MoH
By 2015 – 800 volunteers in all health regions, working with health partners in distinct engagement opportunities.
Opportunities at the local, provincial and national level. With health authorities, universities, provincial programs (cancer care, renal) government ministries, researchers.
ImpactBC responsible for recruiting, training volunteers, supporting engagement opportunities, ongoing education and skill building to both health partners + volunteers, evaluation.

4. Public Engagement in Healthcare
Individual – involved in their own healthcare decision-making and self-management Program and service design – design, delivery and evaluation of care services. System and community – policy and strategic planning
Focus on the latter 2. regardless – how to bring an authentic public engagement experience for everyone involved?

5. Authenticity and Public Engagement
11/13/2018
Authenticity and Public Engagement
Authentic = genuine, real, true, honest.
Authenticity:
the pending decision has not been made, and
the decision-maker commits to being influenced, and
at a specific level that will be communicated in advance.
(2008 BC Auditor-General’s report)
Why is authenticity important? Because public engagement can be encouraged, mandated or legislated, but the authenticity describes the quality of the engagement - that will be the difference between a decision that leads to a mediocre improvement (which will eventually need to be re-worked) and a sustainable improvement because the foundation for the decision was based on genuine dialogue.

6. Spectrum of engagement
11/13/2018
Spectrum of engagement
This is an adaptation of the IAP2 spectrum of engagement – it is used extensively in BC healthcare. Each level represents a different type of influence and at ImpactBc we use it to ensure that the healthcare partner and the patient volunteers have a common understanding of the role of the volunteers and the degree of influence they will have on the decision. This sets the foundation for authentic engagement to occur.
Consult – a clinic of FP doctors makes a plan to change the way they communicate test results to their patients. For 2 weeks, they survey a sampling of patients who come into the clinic about the proposed plan, then decide whether to change the plan based on the feedback, and then implement the plan.
Involve – a surgery department is revising a post-op brochure with instructions for patients to follow on discharge. This hospital serves a multi-cultural community. They invite patient partners from the community to work with them on the design and wording of the brochure to make sure it is culturally appropriate.
Collaborate – truly a partnership. A community needs to understand how youth with mental health issues are identified and how they access the health care system. The community brings in youth, their parents, medical professionals, teacher, social workers, law enforcement representatives – for a day to draw out a map of one youth and family’s journey through the various systems, and then collectively highlight the areas for potential improvement in efficiency and effectiveness.
Empower – Empowerment in this model means that the public partners are able to make the final decision; for example a municipality decides to put a public health issue to a vote – whether or not to ban smoking in all public spaces. Each citizen has a vote and whatever the majority decides the municipality will implement..
- Adapted from the International Association for Public Participation

7. A Multidimensional Framework For Patient And Family Engagement In Health And Health Care.
A Multidimensional Framework For Patient And Family Engagement In Health And Health Care – Kristin Carmen
Kristin L. Carman et al. Health Aff 2013;32:
©2013 by Project HOPE - The People-to-People Health Foundation, Inc.

9. Planning What decision needs to be made?
What is the level of engagement?
Who are the stakeholders?
How do we design a process for engagement that is relevant for the stakeholder needs?
How will we close the loop?
We would send a form to the requester:
What is the purpose of the patient engagement request?
Use the IAP2 spectrum to have the discussion about the level
Define who you want – someone who has experienced this disease/this surgery? A family member of a patient in ICU? How many? Geographical range? Age/gender range?
What is the engagement process? i.e. youth with mental health substance use – not a focus group, teleconference for geographical considerations, venue for physical restrictions, marginalized – can you go to them?
How/when can you share the results of the engagement?

11. How does patient engagement fit into QI? Basic Model for Improvement
Starts with problem definition – if this is program or service delivery issue – end users need to be involved in this part
Aim – usually involves some scoping at this point – public input
Measures/indicators – how does a patient experience this service? Should be one of them… i.e. experience mapping
What ideas do we have? Leading into the PDSA cycle – patient partners can help carry out an improvement idea, collect data etc…

12. Lessons learned? 1. Surveys
Patients valued being heard, being asked to participate and learning about the health system
HCP valued having a unique perspective in the discussion and bringing the focus to patient- centred aspects of the discussion
2. Essential role of a regional engagement liaison

13. 3. Training/orientation is essential
Advocacy vs collaboration
Code of conduct and confidentiality
Self care, speaking up etc
4. Background information for each engagement necessary and sufficient and timely
5. Works best with at least 2 patient partners in each engagement
6. Challenges
Demographic representation
Marginalized and vulnerable populations

14. Thank You!