In the spring and summer of 2017, PHSA, with input from our Patient Experience Council, engaged patients, families, staff and physicians across British Columbia to help develop a Patient, Family and Community Inclusion Policy and accompanying toolkit (how-to guide).
Patients and families, as well as staff, including health care providers and administrators, were asked about what supports they need to build inclusion at all levels: from the individual care level, to programs and community, through to policies and system redesign.
We wanted the stories, experiences, and values of patients and families to be at the heart of the policy. We also knew that we needed to listen to our staff to understand more about the work they do, and the support they need to engage and include patients and families in their work.
We were humbled by the stories, insights and experiences of patients and families across the province. During every session, the words "respect," "care," "compassion," "listening," "communication," "trust," and "transparency" came through directly, or through stories and experiences.
Several major themes also emerged across the engagement sessions we held. Though heard in different contexts and through different patient stories, several messages were delivered consistently from nearly all participants.
Divided into four major themes, the public report
is now available on the PHSA website.
- Know your patient
It is always important for staff and care providers to know who their patient is and where the patient comes from. Staff and care providers can no longer look at patients as inanimate subjects – they are people with a past and a story and they need to be heard and respected. Some patients and family members directly used the words "informed practice", while others described common traits of informed practice: treating the whole person, being compassionate and caring, and considering and acknowledging how a patient's past impacts their current state.
- Challenges with transitions
When done poorly, participants noted that transitions within health care can often lead to disengagement and frustration. Challenging transition points include:
- Within a care facility: patients often find they need to repeat their story to multiple providers – they mentioned the need for fewer providers to examine them if possible, and the need for providers to know the patients' cases before they see them.
- Between care facilities: patients spoke of how there needs to be better coordination between care facilities so that information doesn't get lost, and tests don't need to be taken again.
- Between a care facility and the community: upon discharge, patients often find themselves 'lost at sea' – without proper information or discharge summaries. They spoke about needing better communication about what supports are available to them once they leave a care facility. They need to know what's next.
- Patients and families spoke of their desire to better leverage technology throughout health care to improve access and partnership
Examples include a freely accessible, centralized electronic health record, text and email appointment reminders and virtual health care options.
- Partnership and accountability
Patients and families told PHSA they want true partnership and shared accountability: what they (patients) are accountable for, and what their health care team is accountable for. The term partnership was referenced in more than half of all engagement sessions and we heard many emotional stories from patients who felt their care team had not been accountable to them. Patients and families want to be given clear, written information so that they are better able to follow the care plan, and to ask informed questions when something is unclear, missing, or incorrect. This includes providing limited English proficiency patients and the Deaf and hard of hearing community with interpreters and information in their own language.
Currently we are finalizing an internal report that will provide a more in-depth look at the feedback we received from patients, families and our workforce, as well as a list of recommendations for both the policy and toolkit. The development of the policy and toolkit will be a collaborative process; we will continue to partner with patients, families and our staff in their development.
Thank you to those who took part in these engagement sessions – your input and stories have been invaluable to this project. We recognize that reaching out to patients, families and our workforce is not a one-time activity. We will continue to connect and communicate openly and honestly with those we serve to make sure the policy and toolkit are meaningful and appropriate.
The public report has been distributed to the patients, families, staff and physicians who took part in our engagement sessions. We will also be releasing an American Sign Language video log for our Deaf and hard of hearing patients and families.
Read the full report
. Stay tuned for more updates on the creation of the Patient, Family and Community Inclusion Policy and toolkit.