Patient centricity and shared decision making, essential elements of high-quality cancer care, require that doctors understand the lives, priorities and preferences of their patients before embarking on a cancer treatment plan.
That’s a central tenant of CancerCare’s Patient Values Initiative (PVI) Manifesto, which was first unveiled at the American Society of Clinical Oncology (ASCO) annual meeting.
Speaking to Change Together, the patient advocacy group’s Chief Strategy and Policy Officer Ellen Miller-Sonet notes: “Our 2016 Patient Engagement report found that patients were signing off on physician recommendations and finalizing treatment plans without having an understanding of what they’re in for.
“The initiative has been developed to help make sure that what’s important to the patient is communicated to the physician before cancer treatment recommendations are made,” says Ellen.
Getting the information right
“It was pretty clear from our research that patients didn’t have enough information on the benefits of their treatment, but also treatment options, clinical trials, the care they’ll need at home, whether they’ll be able to work or how much it’s going to cost.”
The manifesto is part of the organization’s wider PVI project, which aims to address these issues by ensuring doctors find out what is important to cancer patients before recommending treatment options.
“If finances are a huge problem, for example, the physician can keep that in mind. Maybe they could recommend a treatment plan that may take slightly longer, but is less expensive or would require limited travel and thus cost less. But, typically, cost and other important quality of life concerns are not part of discussions regarding treatment,” adds Ellen.
“Some members of the clinical team may learn this information over the course of treatment, but they almost never have the opportunity to get to know the patient or what’s important to them before treatment begins.”
Roadmap toward patient values
Developed with the support of an advisory board and a dedicated patient working group in collaboration with advocates, physicians, researchers and representatives from industry, the manifesto provides a roadmap to achieving the objectives of the PVI.
The central premise of the manifesto is that people with cancer and their clinical care teams have a fundamental right to relationships rooted in mutual respect, where communication is open and culturally competent, plain language information is exchanged, goals are shared and patients’ priorities are acknowledged throughout the continuum of care.
It calls on healthcare providers to establish a relational partnership that fosters shared decision making, recognizing that the patient experience is fluid and their priorities may shift.
Fostering shared decision making
The manifesto also suggests creating an environment that fosters trust and mutual respect through plain language information and culturally appropriate, tailored care.
“We want to heighten awareness of the need to consider patients’ priorities. I just don’t think it’s on anyone’s radar at the moment – patients don’t realize they can and should voice what is most important to them as they embark on cancer treatment,” said Ellen, adding that physicians want to work in this way, but are lacking the tools to do so.
“Our next step is to develop tools to help facilitate these conversations. We recognize that time is of the essence in the clinician’s office, so we are working on how to do this in a way that is relatively easy to incorporate in a workflow.”
The answer may be as simple as a form to complete at the first clinic appointment or it may be an addition to the electronic medical record, but either way the outcome would be the same – greater patient engagement, shared decision making and patient-centered care.
“We know that a patient who is engaged and feels they’re being taken care of as a person, not just a disease, have better adherence. When care partners know what to expect, they’re better able to do both their jobs: caregiving and having a life.”
“We believe that through enhanced engagement, patients have a more positive experience which, ultimately, improves patient and clinician levels of satisfaction as well as lowers costs.”
For more on CancerCare’s PVI, go to www.cancercare.org/patientvaluesinitiative