By Shauna Mazenes
For Cecilia Amoakohene, patient care starts with listening.
Listening when patients say they've been disrespected, discriminated against or not taken seriously — all of which are examples of incidents that can cause non-physical harm in a health care setting and need to be addressed.
"I walk through the world as a Black woman, and that always impacts how people perceive me and the level of care I receive," says Cecilia, 31, who in childhood was diagnosed with lupus, a chronic condition affecting the kidneys.
"Systemic environments allow these things to happen, but we can work together and change that by choosing to listen."
Oct. 28 to Nov. 1 marks Canadian Patient Safety Week. This year's theme is: "What comes to mind when you think about health care harm? Let's broaden our understanding together" — a call to action to recognize the different types of patient-reported harm that may be experienced in the health care system, such as psychological, social and spiritual.
In recognition of this need, UHN's Quality, Safety & Clinical Adoption and Patient Experience teams led the development and implementation of a process for identifying, learning from and responding to preventable non-physical harm (NPH) events, which builds on UHN's existing safety event reporting and review system — and is working with patients such as Cecilia to do that.
"We know that patients can be harmed in different ways, and that different people are affected by different issues," says Dr. Lucas Chartier, Vice President of Quality & Safety and Chief Patient Safety Officer at UHN. "This can include emotional, cultural and even community harm.
"Unfortunately, this can happen at UHN, too. We need to be able to identify, review and improve on these events if we are to deliver the safest and highest-quality care possible to all of our patients."
Developed by a multidisciplinary steering committee, UHN is defining NPH as the outcome of an event or events causing damaging effects to an individual's dignity and/or their emotional, psychological, social or spiritual health.
Examples include, but are not limited to, incidents of disrespect; being subjected to any form of racism or acts of discrimination or harassment; threats to personal safety or privacy; loss of trust in health care or damage to therapeutic relationships.
The expansion comes nearly a decade after UHN's Caring Safely journey began in 2015, with the primary focus of reducing preventable physical harm events to zero for both staff and patients through organization-wide transformation. This work led to significant reductions in things such as preventable hospital-acquired infections, medication errors and patient falls.
"With the foundational work laid through Caring Safely, UHN is now progressing further in its patient safety journey by moving beyond the traditional focus of preventing physical harms to a broader definition," says Laura Pozzobon, Manager of Quality, Safety & Clinical Adoption. "The learnings we have gleaned from reviewing patient experiences of non-physical harm have already been informing improvements across UHN."
The World Health Organization and Healthcare Excellence Canada, among other quality and safety experts, have called for the need for more patient-centred care that recognizes, addresses and responds to patient experiences of harm as they describe it.
UHN is among one of the first hospitals in Canada to implement a formal process to learn from a broader understanding of harm.
Cecilia says these changes show that UHN values a patient's entire experience in the system and is committed to both recognizing and learning from such situations.
"It's really important to me to see that these understandings of harm are not only being implemented into UHN policy and procedure, but ultimately, they're being legitimized," she says.
"They're no longer just complaints that people are making up, so to speak — they're real experiences people have that are now being defined and acknowledged in its own category with a common language established.
"It shows patients: We see you, we hear you, and we believe you. And now we're elevating your voices and doing something about it."
Cecilia adds physical and non-physical harm are not mutually exclusive. While the medical world has traditionally focused on physical harms, Cecilia says the two co-exist in the same space and are inherently connected.
For example, lupus disproportionately affects people of colour and is often treated with opioids — it's not uncommon for Cecilia to feel stereotyped as someone with a substance-use disorder because of her race when she resorts to the hospital for treatment of her symptoms.
It's situations like this, Cecilia says, that can damage a patient's trust in the system, making them less likely to seek care.
And for a condition such as lupus, which can cause extreme pain and internal damage, not seeking care when needed can have devastating, if not fatal, physical and non-physical consequences.
"Harm isn't just my health getting worse because of a clinical error, harm also comes from not being treated with the respect and dignity I deserve because I'm a human being," she says.
Cecilia hopes her experience as a young Black woman navigating the health care system with a chronic illness will prevent others from going through the same challenges and looks forward to continue working with UHN in the future.
"I truly believe having a common language for non-physical harm will have nothing but a positive impact," she says.
"It can help us listen, understand each other better, and work towards a world where we're all on the same page about patient experiences."
