From storytelling to action: Revising evaluation tools to better capture the impact of a financial assistance program for breast cancer patients

Abstract Information:

Background: The Susan G. Komen Financial Assistance Program (KFA) provides support to people in current breast cancer treatment and those living with metastatic breast cancer (“patients”) with the aim of reducing financial barriers to care. Patients can use the funds for treatment-related costs or daily-living expenses such as rent, utilities, transportation and food. Most patients have limited interaction with the program due to the nature of the application process and distribution of funds; however, patient stories have provided valuable insight into patient experiences and perspectives, leading evaluators to realize the need to review and revise existing evaluation tools to better assess program impact.

Methods: An evaluation survey is sent to patients supported through the KFA program via Qualtrics. The survey is sent 30 days after funding is distributed and includes quantitative and qualitative questions. Within the main evaluation survey, the patient can select if they would like to share a more in-depth story. If so, they are directed to a follow-up survey allowing them to share a more comprehensive answer about how the KFA program has helped during their cancer experience.

Results: Since October 2021, approximately 20,211 individuals have received funding, 4,433 program evaluation survey responses have been recorded, and 1,330 patient stories have been shared. After receiving over two years of evaluation data, the patient stories have demonstrated that the traditional program evaluation survey tool is not capturing the full range of patients’ experiences. One example is patient narratives that continuously emphasize the use of funding to cover daily living expenses. There is a need to further understand how meeting those needs allows a patient to focus on their breast cancer care. Therefore, the Komen evaluation team has started the process of revising the existing evaluation survey questions to better capture program outcomes and impact. Currently, there is ongoing collaboration with Komen Evaluation Team and the KFA program team, in addition to a search of recent cancer literature, to determine more effective ways to assess outcomes and impact.

Conclusion: Breast cancer patient stories can serve as a valuable tool for informing the need to better assess program impact, especially for programs that have limited patient interaction. By collecting and analyzing patient stories, the evaluation team has been able to further understand program impact. Patient stories have also provided the opportunity to revise evaluation tools to improve metrics used to assess the overall program goal to reduce financial barriers to care. While the evaluation tool revision process is ongoing, incorporating patient stories will continue to add context to existing data and will shape future evaluation methods to understand how financial assistance impacts breast cancer patients.

Relevance Statement: This abstract is highly relevant to the American Evaluation Association conference theme of "The Power of a Story" and the evaluation field. It emphasizes the significance of patient stories in evaluating the effectiveness of breast cancer financial assistance programs, which is particularly significant in light of the growing awareness of the financial challenges faced by cancer patients (Coughlin et al., 2020; Witte et al., 2019). Although the Susan G. Komen Financial Assistance Program provides support to patients, current evaluation methods rely on surveys with inherent limitations that were recognized during the analysis of patient stories. Therefore, revising existing survey tools and incorporating patient narratives is necessary to capture the full range of patient experiences. The outlined proposal is an exemplary demonstration of how a large nonprofit organization utilized breast cancer patient stories as the first step to revise evaluation tools and assess ways to better report program impact. This proposal exemplifies the value of patient stories in evaluation and emphasizes their potential to enhance our understanding of program impact and patient experiences. By highlighting the importance of patient narratives, this proposal provides a valuable contribution to the evaluation field, showcasing the ability to use patient stories to improve evaluation methods and better capture the true impact of financial assistance programs on patients. Coughlin, S. S., Ayyala, D. N., Tingen, M. S., & Cortes, J. E. (2020). Financial distress among breast cancer survivors. Current cancer reports, 2(1), 48–53. https://doi.org/10.25082/CCR.2020.01.004 Witte, J., Mehlis, K., Surmann, B., Lingnau, R., Damm, O., Greiner, W., & Winkler, E. C. (2019). Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications. Annals of oncology: official journal of the European Society for Medical Oncology, 30(7), 1061–1070. https://doi.org/10.1093/annonc/mdz140