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Patient Perspective

A Framework for Person-Centered Care Pathways in Oncology

Authored by

Alan Balch, PhD—Column Editor

Affiliation

Patient Advocate Foundation; National Patient Advocate Foundation, Washington, DC

Disclosures

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

Citation

J Clin Pathways. 2020;6(1):40-42. doi:10.25270/jcp.2020.2.00116

Historically, the development of clinical pathways has been effective in treatment planning for cancer care. In line with the increasing sophistication of pathways, it is time to consider how patient-specific factors and needs can be better integrated into pathways, which have been heavily drug-focused. Making sure care is individualized to each patient’s needs, goals, and socioeconomic status is an imperative to all care providers. This column outlines a proposed framework for how clinical pathways developers in oncology can better integrate person-centered care principles right into a care pathway tool.   


The treatment for many types of cancer is largely drug-based, and the drug therapies are complex and can be highly toxic. Oncologists must ensure that the drug selected is the most effective against the patient’s specific disease presentation while still being tolerable to the patient. The use of a tool to assist with clinical decision support, such as pathways, helps ensure that they are providing optimal treatment to every patient—even patients with less common disease presentations.1-3

It is time to consider how patient-specific factors and needs can be better integrated into pathways that were (initially) heavily drug-focused. A scalable and innovative approach is needed for comprehensive cancer care pathways based on shared decision-making and goal-concordant care planning that leads to a personalized cancer plan for each patient.

The discussion below delineates a framework for designing person-centered care pathways, the clinical goal of which is to maximize the likelihood of delivering the right care to the right patient at the right time. 

Foundations of a Person-Centered Pathway Design

The clinical process of person-centered, shared decision-making and care planning can be organized into a structured and multifaceted plan of care, which is the core definition of a pathway.4 Beyond that, and consistent with the Cochrane consensus review definition, a pathway must also perform at least three of four other objectives:

  1. Channel the translation of guidelines or evidence into local structures.
  2. Detail the steps in a course of care or treatment in a plan, pathway, algorithm, guideline, protocol, or other inventory of actions.
  3. Provide timeframes of criteria-based progression.
  4. Standardize care in a specific population for a specific clinical problem, procedure, or episode of care.4

Pathways based exclusively on standardization of care are useful when the scientific evidence indicates that such an approach is an effective means of achieving better outcomes or at least delivering the same outcomes at a lower cost. However, in certain diseases, such as cancer, the opportunities and need are growing to differentiate care and treatment based on unique characteristics of patients such as genetics, immunology, demographics, and social determinants.  A pathway model can be used to help guide appropriate variation in care based on these and other attributes while also minimizing inappropriate variation in care. Such an approach to the design of pathways would differ from the current pathway paradigm in oncology. At the heart of the presently proposed person-centered approach are three interrelated principles:

  • Respect—seeing and treating each person as an individual without assumptions or judgements.
  • Listening—having a genuine two-way discussion to identify and assess care and treatment options.
  • Personalization—having a relationship with the care team that creates a safe space for honest, direct communications that allows key elements of care to be appropriately customized to meet the goals and preferences of patients.

Shared decision-making and care planning are the practical means by which to integrate these three above features in an effective and efficient way (more on this later), with corresponding quality measures and patient-reported outcomes that reflect individual care goals complementing more traditional clinical care goals. Such an approach intentionally empowers patients and their caregivers to interact meaningfully with the health care delivery system to make personalized, value-based choices about their care and treatment. 

Traditionally, oncology pathways have focused primarily on just one aspect of care delivery (ie, medication selection) with an exclusive emphasis on minimizing inappropriate variation in care. In many cases, the goal of these treatment pathways is to achieve 80% to 90% pathway concurrence with a singular, predetermined regiment.5 The cancer field is moving rapidly toward a clinical environment in which treatment is often based on precision medicine, ie, individual treatment options based on both tumor and personal characteristics. Select pathways programs are beginning to transform into or become part of more sophisticated point-of-care, decision-support tools.6 Drug treatment options may be accompanied by prompts for supportive care, genomic testing, patient discussion, mental health consults, financial planning consults, and other care journey prompts.6-10 This progress, by necessity, calls for more active patient engagement and shared-decision making. The American Society for Clinical Oncology (ASCO) has called for development of more comprehensive care pathways, which include not only treatment selection but the entire spectrum of cancer care.11 All current and future pathways should evolve to not only include other aspects of treatment but be intentionally and foundationally structured to assimilate information about what matters to patients as a means by which to align decisions, care plans, and measurement activities with patient priorities, goals, and preferences. To put it succinctly, the time has come in oncology to create pathways for the delivery of truly person-centered care. 

Practical Components of a Personalized Pathway

The proposed person-centered pathway framework has six key components. Specific recommendations for how to structure these components into a pathway protocol will be provided in future columns:

  • Identifying patient preferences and goals
  • Shared decision-making (which includes care planning)
  • A goal-concordant care plan
  • Measurement and patient-reported outcomes
  • Decision support tools
  • Care coordination and navigation

To channel these components into local structures, the exact scope and scale for each would be co-created at the local level to accommodate unique attributes of the health system in which they are going to be implemented as well as the patient population that is going to experience them.  

At the core of the person-centered pathway framework are shared decision-making and care planning processes across a range of care modalities such as radiotherapy regimen, diagnostic testing (eg, genomic testing) and supportive care (eg, fertility preservation, palliative care, psychosocial support), etc. However, to be effective and meaningful, shared-decision making and care planning first require an intentional process of identifyng patient preferences and goals through a series of preparatory steps and engagement activities that also would be included in the pathway. This preparation provides the essential raw material for personalizing decisions and care plans. Figure 1 depicts a rudimentary workflow associated with some of the key elements of a person-centered care pathway by way of example.

F1

The goal of creating a pathway in such a way is to create what is known in supply chain literature as a “custom configuration” platform12 by which a standardize series of clinical activities can occur consistently and efficiently. But, with these components, a standard feature of these activities are processes that incorporate the unique needs of individuals such that the outcome can be a variety of different care plans customized to some extent to the specific patient preferences and goals. Such an approach leverages the power of standardization while also maximizing the opportunity to appropriately vary aspects of care based on variables most likely to improve outcomes and patient quality of life.  

The overriding goal is, of course, to create a pathway for getting the right care to the right patient based on a range of key benefits and cost factors. To reflect today’s cancer care, the pathways must be able to collate information regarding medical evidence (ie, guidelines), fiscal stewardship (eg, cost-of-care considerations), and patient-specific goals/preferences.  

The pathway protocol should be able to incorporate the following factors into core processes at various points based on when they would have the most value in producing a decision, a care plan, or a quality measurement that is personalized to the needs of an individual patient in meaningful ways: 

  • Genomic profile
  • Clinical benefits
  • Side effects
  • Total cost of clinical care for the episode (eg, tests, procedures, office visits, medication)
  • Key costs related to the receipt of care not covered within insurance design (eg, transportation, lost wages, childcare, lodging, food)
  • Transportation requirements/burden (not just cost)
  • Presenteeism (ie, impact of treatment on job performance)
  • Absenteeism (ie, time off work)

Practical Considerations

Whenever discussions arise about more robust shared decision-making and care planning, one of the first issues that bubbles to the surface is time. The viability of these person-centered pathways depends to a great extent on different members of the care team having enough time to listen to and respond to patient preferences, and this time must be reimbursed or accounted for in alternative payment models. The person gathering and processing personalized information from the patient does not have to be a physician. The use of online surveys and other electronic tools can limit the need for manual gathering of information in the practice setting. Social workers, care coordinators, nurse practitioners, and nurses also can play key roles in this approach—if their time can be reimbursed. In whatever form it takes, that upfront allocation of time and effort to gather key information is an investment that can bear significant fruit in developing the care plan that does in fact deliver the right care to the right patient at the right time. And, if the resulting “on pathway” care plan can be considered authorized and approved for insurance purposes, as is commonly being done for therapy-exclusive pathways, the time-saving benefits would concretely support the case for the additional time/effort required to administer a person-centered pathway.  

Training for all stakeholders is also a crucial component for this new approach. Patients and caregivers can improve both their opportunities and their skills in communicating with their providers. Providers can learn how to use their time more effectively to listen to their patients and engage in shared decision-making.  

Conclusion

While this new approach to clinical pathways and decision making requires significant shifts in the current clinical paradigm in oncology, the potential positives are significant on many levels. This model empowers clinicians and care teams to develop deeper relationships with their patients and together make decisions based on both medical evidence and what fits the individual’s life and preferences. The model also increases the potential that patients will in fact get the right care at the right time, allowing care professionals to repurpose their time and effort now invested in utilization management to more robust shared decision-making and care planning efforts.

References 

1. Rotter T, Kinsman L, James E, et al. Clinical pathways: effects on professional practice, patient outcomes, length of stay and hospital costs. Cochrane Database Syst Rev. 2017;17(3):CD006632. doi:10.1002/14651858.CD006632.pub2

2. Wong W. The evolution of clinical pathways in oncology. J Clin Pathways. 2015;1(1):37-42.

3. Rodríguez-Lopéz JL, Ling DC, Heron DE, Beriwal S. Lag time between evidence and guidelines: can clinical pathways bridge the gap? J Clin Oncol. 2019;15(3):e195-e201. doi:10.1200/JOP.18.00430 

4. Ellis PG, O’Neil BH, Earle MF, et al. Clinical pathways: management of quality and cost in oncology networks in the metastatic colorectal cancer setting. J Oncol Pract. 2017;13(5):e522-e529. doi:10.1200/JOP.2016.019232

5. Gesme DH, Wiseman M. Strategic use of clinical pathways. J Oncol Pract. 2010;7(1):54-56. doi:10.1200/JOP.2010.000193

6. Highlights from the 2019 Oncology Clinical Pathways Congress. J Clin Pathways. 2019;5(9):59-79.

7. An in-depth look at Moffitt Cancer Center’s clinical pathways program and use in payer strategies—part I. J Clin Pathways. https://www.journalofclinicalpathways.com/depth-look-moffitt-cancer-centers-clinical-pathways-program-and-use-payer-strategies-part-i?page=0. Published online March 5, 2019. Accessed January 31, 2020.

8. Michael Hassett: DFCI pathway workflow integration and interoperability [video]. J Clin Pathways. https://www.journalofclinicalpathways.com/multimedia/michael-hassett-dfci-pathway-workflow-integration-and-interoperability. Published online November 4, 2019. Accessed January 31, 2020.

9. Moffitt pathways and value pathways in practice. J Clin Pathways. https://www.journalofclinicalpathways.com/news/moffitt-pathways-and-value-pathways-practice. Published online October 11, 2019. Accessed January 31, 2020.

10. Ellis PG, Brufsky AM, Beriwal S, et al. Pathways clinical decision support for appropriate use of key biomarkers. J Oncol Pract. 2016;12(6):e681-e687. doi:10.1200/JOP.2015.010546 

11. Zon RT, Edge SB, Page RD, et al. American Society of Clinical Oncology criteria for high-quality clinical pathways in oncology. J Clin Pathways. 2017;13(3):207-210. doi:10.1200/JOP.2016.019836

12. Perez HD. Supply chain strategies: which one hits the mark? Supply Chain Quarterly. 2013; Quarter 1. https://www.supplychainquarterly.com/topics/Strategy/20130306-supply-chain-strategies-which-one-hits-the-mark/. Accessed January 31, 2020.

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