The Time Has Come to Involve Patients in Clinical Pathways

03/15/18
Issue
Citation

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

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.

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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