Harnessing community perspectives plays a role in the patient-public journey with healthcare
Gathering public-patient feedback continues to shape health care policy and decision-making
By Lindsay MacKenzie
Winnipeg Regional Health Authority
Published Thursday, July 27, 2023
Patricia Eyamba was one of five Winnipeg residents sharing their personal lived experience with the healthcare system in front of board members and executives for the Winnipeg Regional Health Authority in June.
"Representatives like me who are newcomers, you know, people feel you don’t have something to say," commended Eyamba who immigrated from Nigeria when she was a small child. "But their recognition that the newcomer has a voice and then giving that newcomer the opportunity to speak to participate in the process I think it’s a huge thing."
She volunteers as part of a broader public engagement initiative to ensure the public's voice is heard on matters of health care delivery in the region. The Local Health Involvement Groups (LHIGs) are organized by community areas or neighbourhoods in the Winnipeg health region, which is due in large part because programs and services are offered by geographical location to meet the unique health needs of specific areas.
When the groups began meeting last fall, they were asked to explore the patient journey along with ways communication and awareness of available health care services as well as access to them could be improved.
It's a problem statement that LHIGs members themselves reflected back to the WRHA during a series of consultations designed to draw out operating priorities for the organization over the next five years in their newly developed strategic plan.
"A common misconception about public engagement in health care is that members of the general public are not well-informed about health issues or the complexity of health care systems," commented Janice Edwards, manager of the WRHA Local Health Involvement Groups (LHIGs).
", most members of the public have real-life experiences in their role as patient, caregiver, family, friend, or community member and that's what helps improve the system."
Using the principles of Human Centered Design, which focuses on putting the unmet needs of a system's user at the core of problem-solving, the LHIGs volunteers were able to describe their own interactions receiving health care and how these experiences made them feel to unlock pain points in the system's delivery.
In workshops, the groups grounded themselves by unpacking the concepts of equity and empathy, including how they can influence social determinants of health. To pull everything together, LHIG volunteers used journey mapping to uncover the specific steps a person will take during their interaction with health care program and service delivery. In the case of a patient's journey with healthcare there are five steps to consider.
"I think the key piece is around trust and looking at how we ease navigation for folks," said Jim Dear, Area Director for Downtown / Point Douglas ACCESS Downtown. "Making sure they know how to access the care they deserve and that we should be providing."
When LHIG volunteers presented to WRHA board members and executives in June, they used the patient journey to share their own lived experiences of health care and explained the barriers and pain points they encountered, as well as the enablers that could have helped them receive better care.
Awareness: the patient identifies a need for care and begins searching for information
"My method of seeking information involved consulting my girlfriend who is a nurse," said Craig Adolphe, LHIG St.Boniface-St.Vital volunteer, who shared his experience accessing information to help gather information for his long-COVID symptoms.
"Although some people reported good experiences with Health Links – Info Santé or going to a service provider for guidance, we uncovered some barriers to communication and awareness of services at this stage such as websites with outdated information and broken links and lack of access to technology such as cell phones or computers."
Consideration: the patient weighs their options to determine if the healthcare system can meet their needs
"In my case, I was able to act on the advice I received from my girlfriend," said Adolphe who recognized not everyone has a trusted source who works in health care in their life."
"Again, while some people reported positive experiences," remarked Adolphe, "a few barriers were identified that prevented people from taking the next step of accessing services, such as a lack of trust in the provider, inconvenient hours of operation, transportation difficulties getting to services, and too many steps involved to get information or access support."
Access: the person decides to connect with the health care program or service
"Engaging with an organization can include communication channels such as making phone calls, sending emails, making appointments through online patient portals or just showing up to a facility or office," said Dee Thomas, a retired psychiatric nurse and LHIG Downtown-Point Douglas volunteer.
"My experience led me to choose Ma Mawi Wi Chi Itata for where I would receive my COVID-19 vaccinations and COVID screening tests," said Thomas who praised the health care delivery organization for providing culturally safe care.
Other LHIG members recognized that this stage of the patient journey encountered some of the most difficult barriers to overcome, citing frustrations with multiple unreturned phone calls, jargon-laden communication and breakdowns in how messages where shared between people and departments.
Service Delivery: care is provided to patients and their supports (families, caregivers)
"I've had my fair share of personal experiences at this stage - both as a patient and in the role of family member and caregiver," explained Lynn Silver, a LHIG St. James-Assiniboia-Assiniboine South volunteer who shared her experience with palliative care when her husband received a terminal diagnosis.
"Of all the stages of the patient journey, this is perhaps when we're most vulnerable," said Silver.
"Good communication goes a long way…to remind us that we're at the centre of the care being provided."
Barriers expressed by LHIG volunteers at this stage included, a feeling of not being taken seriously, one-way communication from provider to patient and long periods of no communication at all when receiving care.
On-going Care/Engagement: occurs after the interactions directly related to service delivery and incorporates care management
"This was a reminder for me that the patient journey doesn't just consider access and service delivery", said Patricia Eyamba, LHIG River Heights-Fort Garry volunteer. "Ongoing care recognizes that patient interactions with the healthcare system go well beyond the walls of a medical facility itself."
"It's not just when follow-up is required post-discharge but it is an opportunity to keep us informed and aware about services that we may one day need."
Eyamba was invited to participate on a hiring panel as Victoria Hospital was interviewing for the executive-level chief operating officer role last year.
Interconnectedness between patients and public bridge gaps in understanding
Patients communicate with their health care providers and services through a variety of channels such as websites, phone lines, social media and email; at the same time interacting with a wide range of departments and individuals along the way.
Unfortunately, the COVID-19 pandemic highlighted for the public a Canadian healthcare system that is a patchwork of facilities, providers, programs and services. Each are operating with their own technologies and systems, which makes communication with the public and patients extremely challenging.
As the healthcare system bounces back from the scars of a pandemic, it will be important to prioritize and expand how the WRHA is listening to and acting with feedback provided by patients and the public to close gaps and make continuous improvements based on unmet needs.
Understanding the patient journey is important to improving communication and access to available health care programs and services because each interaction or touchpoint, from a simple visit to your website, a phone call inquiry to checking in for an appointment, has effects on care delivery downstream that can either help or hurt the healthcare system's ability to meet patient needs.
"My hope would be to ensure that we [LHIG volunteers] are partners in care," said Eyamba. "We [need to] make sure that the patients have a voice, that they’re listened to, and we treat them with dignity and treat them with the respect."
For more information about Local Health Improvement Groups, or to explore how you can get involved, visit wrha.mb.ca/engagement/lhig/.