The Time Has Come to Involve Patients in Clinical Pathways


J Clin Pathways. 2018;4(2):39-41. doi:10.25270/jcp.2018.03.00008


Patient Advocate Foundation and National Patient Advocate Foundation, Washington, DC


Dr Balch is the chief executive officer at the Patient Advocate Foundation and National Patient Advocate Foundation, Washington, DC.

Patients are not often given a voice in the development and implementation of clinical pathways, the main focus of which have been to provide treatment options and guidance primarily based on clinical medical evidence and disease state guidelines. Yet, individual patient preferences are a crucial part of treatment plans, as social, economic, and financial circumstances have a direct impact on each patient’s care goals. While clinical pathways have been narrowly focused historically, steps can and should be taken by providers and stakeholders to ensure that patients and their individual preferences are adequately represented in pathway development. 

Few people facing serious illness are aware that that clinical pathways and treatment guidelines exist or understand the potential impact they might have on their treatment options. While pathways and guidelines are becoming increasingly important to clinicians and payers, they remain largely invisible to patients and caregivers. When they do actually encounter a clinical pathway, patients often find it inaccessible, difficult to interpret, and hard to apply to their specific circumstances.  

That does not mean that it has to be this way. A recent meeting of the Cancer Innovation Coalition (CIC), hosted by National Patient Advocate Foundation, tackled the topic of “Integrating Patient Perspectives into Clinical Pathways.”1 The presentations and ensuing discussion yielded a number of key points that can open doors to increased patient awareness of and involvement in the development and implementation of clinical pathways. 

A wide range of health care stakeholders are actively engaging patients and patient advocacy groups in their processes as equal and valuable partners. These areas of involvement include quality measures, clinical trials, value frameworks, and scientific research. Clinical pathways can follow suit.2 

The CIC panelists included representatives from leading medical institutions, health care systems, and a company that develops clinical pathways. Despite their different perspectives, the participants agreed that the time is right for integrating patients into the clinical pathway process. Their presentations highlighted 2 meaningful first steps to achieving this goal:  

• Include patients and patient advocacy groups in the process of designing the pathways similar to what is commonly done with treatment guidelines.

• Identify factors that are meaningful to patients in defining and selecting care options and incorporate them into the pathway protocol either as an “exception” at the end (ie, outside the algorithm) or as branch points in the algorithm.

value of patient-provider relationships Patient engagement begins with the patient provider relationship. In surveys, interviews, and focus groups, people facing serious illnesses consistently point to trust, mutual respect, and good communication as vital and valuable to them.3 The importance of this relationship is often directly linked to one of the most pivotal experiences in a patient’s journey: shared decision making with their physician. This process and the goal-concordant care planning that it allows should be based on individual patient preferences as much as possible.

Clinical pathways can be a valuable tool to support shared decision making if they help filter the evidence-based options against various criteria defined by the patient.2 The real value of pathways is their ability to base treatment options on a foundation of evidence grounded in treatment guidelines that may exceed the knowledge easily accessible to the physician. That is, in part, because that evidence base can be complex, highly technical, and in a rapid state of flux, making it difficult for both physicians and patients to access and understand. 

However, clinical pathways can potentially do a disservice to shared decision making and the doctor-patient relationship on which it is built if they limit options for patients in ways providers are not aware of and/or if they do not reflect relevant and meaningful “decision criteria” for patients. Patients generally and rightfully assume that their doctors make decisions in their best individual interests but are far less cognizant of the role a clinical pathway can play in driving those choices.4

Translating Pathways According to Patient Preferences

One of the common themes espoused by several of the panelists was that clinical pathways need to be capable of producing granular and customized care recommendations for individual patients. The key word here is granular. As David Jackman, MD, a medical oncologist at the Dana Farber Cancer Center, who also serves as medical director of their clinical pathways program, said, “No one size fits all. We need to make sure that our pathways offer leeway for both patients and doctors. It’s crucial at every point of care that we give doctors and patients useful information that they are not accustomed to getting now.” 

In the panel discussion, Andrew Hertler, MD, chief medical officer of New Century Health, added, “There doesn’t have to be a conflict between personalized and standardized care. We can take generic pathways and tailor them to individuals and actionable patient preferences.” The rapid and profound emergence of personalized medicine is making the delivery of this information more critical as well as more challenging and more doable. Genomic markers and immunotherapies are transforming personalized care into the standard of practice for so many cancer patients. “We can now utilize pathways as a tool to capture genomic characteristics or the responses of specific subsets of patients to drug regimens—factors that influence treatment decisions—and to communicate this evidence base to patients,” said Tracy Gosselin, PHD, RN, chief of nursing and patient care services at Duke University Hospital. “We just need to get better at translating a pathway that lives in a system to the individual patient.”

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