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Patient Perspective

The Time Has Come to Involve Patients in Clinical Pathways

Authored by

Alan Balch, PhD—Column Editor

Affiliation

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

Disclosures

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

Citation

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

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.”

 

L1

Broadening Pathways Beyond Medical Issues Alone 

Pathways are built by first comparing treatments based on clinical benefits followed by toxicity.  When treatments are considered equal based on those 2 domains, some measure of the cost of the treatment (eg, Medicare list price) is often considered in many pathway designs. However, as several patient advocates pointed out during the meeting, the value of clinical pathways is not limited to narrowly defined medical issues. Pathways can and must address other issues that impact the patient experience, quality of life, and the outcomes of treatment. Among the specific issues panelists identified are tolerance for specific therapies; financial issues; transportation and travel; oral vs infused therapies; impact on employment; impact on personal life, including sexuality and fertility; and the impact of diet and nutritional issues.  

Depending on their circumstances, patients may make widely divergent choices about treatment options—preferences that are not always reflected in clinical pathways. A musician, for example, may refuse treatment that results in neuropathy. Patients whose focus is on extending life regardless of the risk may be willing to accept more serious side effects to achieve their long-term goal. Conversely, it is not uncommon for patients to decline or seek alternate therapies that result in what they perceive to be a balance between quality of life and treatment efficacy.  The consensus view from the patient advocates gathered was that, for pathways to work for patients, they must be sufficiently flexible to acknowledge and allow for what matters to patients in the decision-making process. Pathways need to build meaningful and reasonable patient preferences proactively into the pathway protocols. 

Clinical pathways also need to take financial issues into account. These issues include the obvious ones related to the direct cost of care and to cost/benefit analysis of treatment outcomes. But they must also directly or indirectly incorporate the very real costs patients and caregivers encounter as a result of their illness, including traditional out-of-pocket expenses (ie, copays and coinsurance) as well as other common sources of financial distress such as transportation, lost work time, and childcare—issues that have been shown to have an influence on patient adherence to treatment. 

Where to Start

The only way to ensure that pathways work as a tool to facilitate shared decision making and person-centered care is to involve patients in the process of designing, reviewing, and evaluating clinical pathways. While for some this point may seem like a “Thanks, Captain Obvious” moment, this basic level of patient input does not occur often enough right now for clinical pathways. The only way to find out what matters to patients is to ask them. The only way to incorporate patient-reported outcomes as a measure of success or failure for a pathway is to actively engage patients and advocates in the relevant review committees.

Patient engagement is becoming the norm in many other closely related arenas. For example, researchers designing and assessing clinical trials and guidelines have moved beyond pro forma, checklist patient participation to insisting on substantive patient involvement in every phase of trial development and implementation. The Institute for Clinical and Economic Review has an extensive set of guidelines for involving patients in their research.5 The Patient-Centered Outcomes Research Institute has demonstrated the value and viability of embracing an approach that includes training and other systemic changes to ensure that patient feedback represents the collective rather than just an individual experience.6 In addition, National Comprehensive Cancer Network now includes patient representatives on many of their guidelines committees.

Stephanie McCutcheon, PharmD, chief pathways officer for VIA Oncology, agreed, although she acknowledged that patients are not currently included on their review committees. “Our model can accommodate various scenarios as options that can vary from the ‘on pathway’ protocol. Our panels review these off-pathway designations to identify and assess the areas in which we need to make modifications and take patient preferences into account.” Getting to a defined, effective and transparent patient engagement strategy requires a shift in thinking and acting, but it can be done, and it works. In future columns, we will take a deeper dive into these issues and bring the patient perspective to clinical pathways. 

References

1. National Patient Advocate Foundation (NPAF). NPAF website. https://www.npaf.org/get-involved/events/. Accessed February 26, 2018.

2. Balch AJ, Balch CM, Benson A III, Morosini D, Rifkin RM, Williams LA. Recommendations for the role of clinical pathways in an era of personalized medicine. Am J Managed Care. 2016;22(5):SPC1, SP179-SP180.

3. National Patient Advocate Foundation (NPAF). The roadmap to consumer clarity in health care decision making. NPAF website. https://www.npaf.org/wp-content/uploads/2017/07/RoadmapWhitePaper_ecopy.pdf. Published May 2017. Accessed February 26, 2018.

4. Abrams E, Balch A, Goldsmith P, et al. Clinical pathways: recommendations for putting patients at the center of value-based research. Clin Cancer Res. 2017;23(16):4545-4549. 

5. Institute for Clinical and Economic Review (ICER). Patient Participation Guide. ICER website. https://icer-review.org/patient-participation-guide/. Accessed February 26, 2018.

6. Sacristán JA, Aguarón A, Avendaño-Solá C, et al. Patient involvement in clinical research: why, when, and how. Patient Prefer Adherence. 2016;10:631-640.

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