The Importance of Setting Goals, Collecting Data, and Measuring Impact in Patient Navigation Programs

June 2019 Vol 10, No 6
Dawn Wiatrek, PhD
Interim Senior Vice President, Patient and Caregiver Support, Global Headquarters, American Cancer Society
Nicole L. Erb, BA
Director, Navigation Grant Implementation Program, Global Headquarters, American Cancer Society
Shelby Roberts, MPH
Principal Consultant, SSR Advisors

While it is clear that navigation programs are providing value to both the patients and the healthcare systems they serve, the lack of consistent, standardized metrics makes it difficult to clearly demonstrate and quantify this benefit. Without this type of objective data, developing a business case for reimbursement or payment for navigation services is challenging. As the healthcare landscape moves toward the Triple Aim of reducing cost per capita, improving patient experience, and advancing health outcomes,1 navigation programs must also demonstrate the value of tracking patient experience, clinical outcomes, and business performance or return on investment metrics.2 In addition, navigation programs must be responsive to the unique needs of the systems in which they are developing.

The American Cancer Society (ACS) Patient Navigation Research Program3,4 and the Academy of Oncology Nurse & Patient Navigators (AONN+)2 have developed recommendations on standardized metrics to be used by the field of navigation. These metrics have focused on the entire continuum of care and all types of navigation (lay, clinical, etc). Although these lists have been well researched and clearly defined, the metrics are rarely implemented by the programs they are designed to measure due to a variety of reasons, including lack of funding, limited or no integration of navigation programs in the electronic health record (EHR), and priority given to other quality metrics in healthcare.

In an effort to better understand the difficulties in the implementation of these metrics and guidelines, the ACS, AONN+, and Chartis Oncology Solutions recently collaborated on a multisite exploratory quality study.5 This study aims to gain insight into the challenges navigation programs experience in implementing measurement systems in navigation practice, and elicit effective strategies for overcoming those barriers. A Navigation Metrics Implementation Toolkit will be developed based on study findings and disseminated broadly. In addition, the National Patient Navigation Roundtable (NNRT) is surveying navigators to learn more about their challenges and successes in implementing oncology navigation program metrics.6 These survey results will help identify needed tools and resources for navigation programs in the future.

Collecting Data

The ACS Patient Navigator Program (ACS PNP) Metrics

The ACS PNP currently provides services in over 70 communities nationwide and uses a proactive approach to guide cancer patients, their families, and caregivers at hospitals and cancer treatment facilities to personalized and reliable cancer information, resources, and services to help them through their cancer journey. The primary goal is to provide a patient-centered, sustainable service delivery intervention that removes barriers to cancer care throughout the continuum, assuring access to timely cancer detection, diagnosis, and care and integration into the healthcare system.

Concurrent with the initiatives mentioned above, the ACS has also been piloting a quality improvement program for its existing navigation program. This enhanced lay patient navigation process (Figure) was implemented in 6 pilot sites nationwide as part of the ACS Care Coordination Navigation Program to Reduce Disparities in Cancer Care (CCNP), a 4-year quality improvement navigation pilot program funded by the Merck Foundation.7 The goal was to enhance existing navigation services by adding 2 new components designed to:

  1. Increase patient activation/engagement to help support and empower them to be more actively engaged in their own care and self-management
  2. Increase care coordination both within the cancer treatment team and in the broader medical neighborhood.

NavigatorOrientation_table1

This pilot program focused on building navigator coaching skills they can use to better support patients in problem solving to overcome/manage barriers to care. Navigators also collected data on several key process and outcome metrics, including:

  • Patient activation measure (pre and post)8
  • Patient barriers identified at intake and follow-up visits (list of 15 barriers)
  • Navigator actions taken at each visit (in 3 categories, including coaching, referral, and assistance)
  • Patient actions planned and updated at each visit (as part of the patient-led action plan)
  • Progress on actions in the action plan
  • Overcoming/managing barriers
  • Treatment adherence and completion.

Measuring Impact

Based on preliminary results of the pilot program implementation, next steps are to scale the program enhancements to the full ACS PNP. In 2018, the ACS PNP reached nearly 40,000 patients and caregivers, with 37% being medically underserved.

Previously, ACS PNP metrics were largely collected manually in an intake form that was keyed into an ACS database. Currently, the ACS is using a new database to track program metrics for case management, program monitoring, and reporting. Planning is underway to develop an enhanced ACS PNP standard business process for the new ACS database to be able to scale key data elements identified from the pilot program.

Although the database will be developed in phases, the goal is to design a system that records and tracks patient barriers, patient activation/engagement scores, navigator actions, patient action plans, and progress on action plans. These data will give a more qualitative view of patient need and demonstrate the navigator’s ability to coach the patient through overcoming/managing those barriers to completing cancer treatment. Program outcomes will be measured by the patient’s ability to achieve actions set in the patient action plan and the ultimate outcome of successfully overcoming/managing the barrier.

The ACS PNP will be working to have an open dialogue with healthcare systems partners about this planned shift in data collection and seek buy-in and support for process and outcome measurement. With buy-in from healthcare systems partners, programs will be able to compare patient outcome data to be able to evaluate program metrics comparing patients that were and were not navigated.

A long-term goal is to move the program toward measurement of clinical outcomes, including treatment adherence/completion and reduction in cancer mortality disparities. Currently, accessing this type of data is challenging for many navigators, largely because there is no consistent definition for adherence or easy way to report treatment adherence and completion from the EHR. The ACS plans to continue developing the database to support the collection of additional data, with an emphasis on outcome measures. The primary goal is to move the ACS PNP beyond measuring the number and types of services provided to the impact that these services have on reducing barriers and helping patients successfully complete treatment.

Summary

Various barriers in implementing measurement systems exist, but overcoming these barriers is critical in ensuring the sustainability of navigation programs. Navigation programs provide patients with the tailored support, coaching, and follow-up they need to help ensure they can continue treatment.

Navigation programs interested in beginning to look at outcomes should review the existing standardized evidence-based oncology navigation metrics and identify a few that are important to their program to begin measurement. Slowly integrating outcomes measurement can reveal new data to healthcare systems partners and help the navigation program communicate overall outcomes where previously only anecdotal observations combined with program outputs existed.

As these pilot initiatives evolve, programs should establish data policies, processes, and tools and support implementation and fidelity through navigator training, continuing education, and technical assistance. This will support quality data capture, tracking, monitoring, and reporting on key program process metrics to be able to demonstrate value for the sustainability of oncology navigation programs. Future publications from the ACS CCNP pilot, the AONN+/Chartis Oncology Solutions/ACS metrics study, and NNRT survey will be valuable guides to navigation programs setting program goals, overcoming barriers to collecting data, and measuring impact.

References

  1. Berwick DM, Nolan TW, Whittington J. The Triple Aim: care, health, and cost. Health Aff (Millwood). 2008;27:759-769.
  2. Academy of Oncology Nurse & Patient Navigators Announces Standardized Navigation Metrics. https://aonnonline.org/education/arti cles/10-aonn-announces-standardized-navigation-metrics. 2017.
  3. Esparza A, Calhoun E. National Patient Navigation Leadership Summit (NPNLS): measuring the impact and potential of patient navigation. Cancer. 2011;117(15 suppl):i-ii.
  4. Freund KM, Battaglia TA, Calhoun E, et al. National Cancer Institute Patient Navigation Research Program: methods, protocol, and measures. Cancer. 2008;113:3391-3399.
  5. National Evidence-Based Oncology Navigation Metrics: Multisite Exploratory Study to Demonstrate Value and Sustainability of Navigation Programs. https://aonnonline.org/education/standardized-metrics/naviga tion-metrics-quality-study. 2018.
  6. Navigation Roundtable Survey. https://survey.vovici.com/se/10F84F8B6D5BEFAA. 2019.
  7. Merck Foundation Awards Grant to American Cancer Society for Program to Improve Access to High-Quality Cancer Care in Underserved Communities. http://pressroom.cancer.org/MerckFoundationgrant. 2016.
  8. Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med. 2012;27:520-526.
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Last modified: August 10, 2023

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