Skip to main content

Because your voice matters.

“Nothing About Me, Without Me”: The Patients as Partners Initiative

Posted • Last updated

Categories: Patient Voice Mail, Working Together for Better Health Care

The Patient Voices Network’s mission is to “advance authentic patient engagement by building our partners’ capacity so person- and family-centred care becomes the foundation on which all health care decisions are made.” Part of enacting this mission is ensuring that patient voices are included in feedback opportunities. It’s key that changes made to our health care system are inclusive of patients – and that’s what the Patients as Partners Initiative strives to accomplish. The initiative included a few PVN patient partners in this important work.

The Patients as Partners Initiative was founded by the Ministry of Health on the principle of, “Nothing about me, without me” and an aim to ensure that voices of patients, family members and caregivers are incorporated at all levels of the health care system. From late 2017 to early 2018, it hosted a series of Regional Engagement Tables where patients, family caregivers as well as health care providers and administrative staff discussed and provided input on a variety of topics.

The event in Interior Health’s region sparked positive feedback from patient partners:

“Overall, I felt energized by the opportunity to talk and share ideas with such a diverse group of people who all really want the same thing.”

“I found the session very valuable, and I learned so much.  We were introduced to services that I never knew existed and, as we discussed, many health care providers didn’t necessarily know about either.”

The initiative later hosted a one-day workshop to bring together voices from across the province to learn from each other and provide input on the five key themes which emerged from the regional engagement tables.

  • Improving access to primary care
  • Improving access for rural and remote patients and families
  • Team-based care
  • Cultural safety and humility
  • Urgent and primary care centres

Next, a Community Conversation event was held in March 2019 in Vancouver and provided a summary of the findings from the six regional sessions. The purpose of the event was to receive input on the provincial Digital Health Strategy; this included patient portals, which are online tools that allow patients to book appointments, communicate with their health care providers and access their health information.

The event also aimed to build patient empowerment and identify challenges and strategies for enhancing community engagement and person- and family-centred care. Reports were shared with ministry and health authority leaders and staff for use in policy development and strategic planning. A suite of provincial policies on virtual care is currently in the final stages of development.

A graphic recording called "Empowering Patients & Families and Building Trust".
Ministry of Health staff in the Information Technology Branch provided information on the Digital Health Strategy and Patient Empowerment to all participants. A summary of the presentation is provided in the graphic image above.

When checking back in with the Ministry of Health in 2021, they shared that there have been numerous improvements that were either sparked or reinforced by the outcomes of these consultations. Some examples include: 

  • Improved communication of free self-management resources through the development of an online calendar on the Patients as Partners website
  • Enhanced chronic disease self-management resources and methodology for community development with multicultural populations
  • Increased reach/work on integrating traditional healing through work with the iCON (interCultural Online Health Network)
  • Pain BC developed a new self-management program with topics of interest and an approach for people who are less likely to join mainstream self-management programming. Pain BC also worked with Elders to further modify the content to ensure that the materials are culturally appropriate for Indigenous people with chronic pain.
  • In the Community Conversation report, social isolation was raised as an issue. This was of particular concern to the Patients as Partners team due to COVID-19. To address this, funded partner organizations made extra efforts to reach out to their communities and provided information on how people can continue to access services as well as providing additional resources that could help people enhance their online skills. For example, Pain BC sent out cards via mail to patients on how to access services.

Summaries of the regional sessions can be found here:

From Our Community

Shana Ooms

Executive Director of Primary Care Strategy, Policy and Quality — BC Ministry of Health

Shana Ooms

Where those of us in the room may have debated policy or wording, patient voices made sure patients were top of mind. And as a result, significant improvements were made to simplify something that was otherwise complex. Patient voices at the table bring us back to reality in terms of what we are trying to achieve.