The Provincial Health Services Authority (PHSA) recently engaged PVN Patient Partners, as well as patients and families across the province, in a province-wide opportunity to help develop a Patient and Family Inclusivity Policy and Playbook (toolkit). In this post, project lead Shannon Griffin recounts PHSA’s experience engaging patient partners:
“Our goal with this engagement opportunity was to understand what defined true partnership, and what we needed to include in a policy and playbook to support engagement. This is part of a culture shift to continually build our system, focusing our services around patients and families. Our patients are unique, and have different needs, but they all want to be engaged to some degree.
We were looking to hear from patients and families, as well as the general public and our workforce, around key things that were important for them in a policy about inclusion and engagement. So we decided to work in different ways to engage a broad audience and reach that goal.
In addition to one-one interviews with patients, online surveys for the public and our workforce, and workshops with our PHSA Workplace Culture and Patient Experience Councils, we held focus groups with:
- Patients, families and our workforce in Vancouver, Nanaimo, Prince George and Kelowna
- Patients, families and the public, in Mandarin, Punjabi and Cantonese
- The deaf and hard-of-hearing community, along with a follow-up meeting
- Youth and program-specific clients and providers
- Indigenous staff and patients and families
- Specialized patient groups associated with the populations we serve
We engaged approximately 150 patients and family caregivers in this project, and heard:
- Many patient stories – some filled with hope, others with frustration;
- A desire to be highly engaged in their own care, but also to share what they experienced so that the system and the delivery of care can be continuously improved for others; and
- A ‘back to basics’ message around compassion, respect and partnership.
The engagement findings report isn’t finalized yet, but some initial big themes we’ve gathered from the project are:
Care, compassion and connection
Patients and families want their provider to care about them as a person – not just to be treated as their diagnosis – and they want compassion. “I am more than my chart. I want you to give me hope and options,” said one patient. What’s more, patients – young and old, those in care by their own choice or mandated – all wanted to have a health care team and providers that are happy and smile. “Their good or bad attitude affects me,” said patients. This confirms that health care is highly personal and a caring profession.
Information is key to partnership and engagement
All of the patients said that they want access to clear, straightforward information. They want to know side-effects of their prescriptions, what tests are being done and why, interpretation of results, and the contents of their charts. “The nurse walks by and says, ‘he’s a 62 – what does that mean?’” asked one patient.
In addition to specific information about diagnosis and treatment, patients want to understand the journey they are on and what they can expect. They want this information provided in accessible language, and in ways that help them be an informed and engaged patient.
Access is a critical theme for patients, and refers to: wait times; having to travel to Vancouver for specialized care; receiving care for rare and/or chronic disease; and language access, including sign-language for the deaf and hard-of-hearing community. Without access, patients have difficulty engaging in their own care. When they have to advocate (or fight) for access, they’re not able to engage in program and/or system improvement. “Information about accessing interpretation services needs to be easily accessible and understood by all staff,” said one deaf patient. Interpretation services are not optional.
In the coming weeks and months, we will develop a report about what was heard. The draft report with recommendations on Patient and Family Inclusivity will shared with patients, families and our PHSA workforce members for additional input before the policy is finalized. From there, specific tools and resources will be developed in partnership with PHSA agencies, programs and services as well as patients and families to ensure there are useful, practical tools to help everyone in implementing the spirit and intent of the policy.
We want to thank everyone who took the time to participate in our project. We know people are busy, so we appreciate it even more when they participate and share their experiences, so we can learn from them and continue to build an organization that is person-centred and meets the needs of those we serve.
Stay tuned for additional blog posts about this engagement process and what we learned about engaging diverse communities!”
More about the Provincial Health Services Authority
PHSA provides specialized care across British Columbia. While many patients and families may not know the name, they may be more familiar with PHSA’s agencies, which include:
- BC Cancer Agency
- BC Centre for Disease Control
- BC Children’s Hospital and Sunny Hill Health Centre for Children
- BC Emergency Health Services (includes BC Ambulance Services)
- BC Mental Health & Substance Use Services (includes Forensic Psychiatric Services)
- BC Renal Agency
- BC Transplant
- BC Women’s Hospital + Health Centre
- Cardiac Services BC
- Perinatal Services BC
Visit the Provincial Health Services Authority website to learn more.