CancerCare Addresses Barriers to Patient Engagement in Treatment Decisions


CancerCare study is part of greater initiative aimed at ensuring that patient engagement in decision making becomes part of the standard of care.

Despite recent advances in precision oncology therapy, many health care teams still question why barriers remain in engaging patients in the treatment decision-making process.

This question is at the root of a project undertaken by the patient advocacy organization CancerCare as part of a larger effort called the Patient Values Initiative (PVI), which is aimed at reframing the national healthcare policy framework to ensure that patient engagement in treatment decision-making becomes the true standard of care.

When patients meet with their providers in person, it is a prime opportunity for eliciting information about their lifestyles and priorities to create a treatment plan that best suits them. Decisions about their care might be influenced by how well they can communicate with providers about what is important to them.

However, initiatives must be put in to place to address existing barriers.

Therefore, CancerCare conducted a qualitative study to evaluate what these exact barriers might be from the provider perspective. The study included in-depth interviews with 15 oncology providers, advanced practice nurses, practice managers, and electronic medical record (EMR) developers to gain an understanding of the importance and utility of learning about patients’ lifestyles and priorities. In addition, the researchers investigated how and when this information is recorded and later shared with the multidisciplinary health care team.

Providers interviewed in the study represented perspectives from diverse settings of care, both academic medical centers and community clinics, rural and urban settings, as well as different geographic regions.

In a white paper, titled “Decision Making at the Point of Care: Voices of Oncology Providers,” CancerCare shared the enlightening results of the study.

Providers reported a wide variation in what specific information is being captured, when it is collected along the care continuum, and how it is used to inform care planning and decision making. Though providers would like to capture personal information related to patients’ quality of life (QOL) and share it among care team members, they often do not have formal procedures to do so. Some also lack appropriate fields in their EMR systems for recording patients’ QOL priorities.

While providers know that financial concerns play a key role in patients’ lifestyle choices and priorities, they reported hesitation to discuss finances with patients because they typically do not know the full extent of out-of-pocket costs incurred by the patient.

Providers also reported that many felt challenged by difficulties in interoperability between data sources among a patient’s healthcare team. Integration of data remained a major obstacle, especially as smaller and community practices are acquired and consolidated, according to study findings.

An Exemplary Approach

The University of Arizona Cancer Center has streamlined the process it uses to learn about new patients while simultaneously bringing their information into the EMR system in a way that covers all Oncology Care Model requirements, nurse practitioner Sandra Kurtin, PhDc, ANP-C, AOCN, wrote in the white paper’s “A Patient Values Initiative Issue Brief.”

Involving a multidisciplinary team and recording relevant information in the EMR, the university integrates each position using the following process:

  • A nurse navigator conducts a phone or in-person intake interview with the new patient.
  • The doctor then has their initial meeting with patient.
  • Before treatment begins, new patients receive a “Living With Cancer” booklet that provides an overview of the services and a list of personnel that will be a part of their healthcare team.
  • The patient and caregiver(s) meet with a financial counselor to discuss anticipated out-of-pocket expenses based on the patient’s specific insurance plan.
  • The patient and caregiver(s) then meet with a social worker who is trained by their in-house psychiatrist to address issues such as identifying a power of attorney and healthcare proxy, and advanced care planning.
  • A nurse meets with the patient to discuss the specific treatment plan, including anticipated adverse effects, reportable signs and symptoms, and strategies for self-management. Discussion points are then entered into the patient’s EMR. Of note, all patient information collected from these visits informs treatment direction, and the process is built into the center workflow.

Next Steps

CancerCare is following up on the qualitative study by conducting a quantitative survey among oncology clinicians to better understand the findings. Along with the perspectives from the patient and provider focus groups, it will inform the development and pilot testing of turnkey, low cost tools to facilitate the communication of patients’ QOL priorities during treatment planning.

The ultimate goal of the PVI is to ensure that genuine patient engagement in cancer treatment decision making becomes the standard of care, so that treatment plans reflect the true priorities, goals and needs of each patient.

“Stakeholders across the oncology community are becoming increasingly aware that incorporating patient priorities into treatment decisions is a key element of ‘value’ to the patient,” said Ellen Miller Sonet, CancerCare’s Chief Strategy and Alliance officer.

Learn more about CancerCare’s Patient Values Initiative.

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