Kelly de Ligt, PhD
Postdoctoral researcher at the Netherlands Cancer Institute in Amsterdam
Patient-reported outcome measures (PROMs) have the potential to empower cancer patients in managing their health and enhancing their health related quality of life. Empowering patients can advance person-centered care, support patients in advocating for their needs, and promote sustainable survivorship care – an imperative given the increasing demands on healthcare systems.
Since 2021, PROMs have been implemented in clinical practice at the Netherlands Cancer Institute in Amsterdam, The Netherlands. Newly diagnosed patients across ten cancer types are invited to complete PROMs before, during, and after their treatment. However, while 70% of patients regularly complete their PROMs, many miss critical opportunities to use their results to manage their health and quality of life. That is, the current presentation of results as numbers or graphs often poses interpretation challenges for patients. To address this, we developed personalized narratives: stories based on patient experiences that illustrate their journey with disease, health, and treatment. These narratives place the patient as the central figure, fostering resonance with the reader (Boomstra et al., J Can Surv, 2024, presented at ISOQOL 2022). Additionally, while healthcare professionals can guide patients in using PROMs, their engagement has been insufficient. We sought to improve this by studying the implementation fidelity of PROMs, enhancing their usability for clinicians (Boomstra et al., presented at ISOQOL 2023).
In our presentation at ISOQOL 2024, we emphasized the critical role of effective communication in realizing the clinical benefits of PROMs. The process involves multiple communication steps: inviting patients to complete PROMs, patients completing them, providing feedback to both patients and healthcare professionals, and using these scores for patient management. Indeed, we are convinced that effective communication is key to realizing the clinical benefits of PROMs, but it is currently underexplored. Importantly, patients vary in their skills, knowledge, preferences, and motivations for completing PROMs, as well as in their ability and willingness to interpret and apply PROs in managing their health. Despite these differences, current communication practices often fail to accommodate such diversity.
We advocated for personalized communication to make PROMs better accessible to diverse populations. As personalizing communication manually can be highly labor-intensive, we presented several examples of digital technologies that can offer a feasible solution to accommodate PROMs for various patients. These included automatic data-to-text generation (including multimodal outputs like text combined with data visualizations) and conversational agents, which can help tailor PROMs to the unique needs of various patients. Despite the fact that the proposed digital applications, which are rooted in AI, need further evaluation, we envision a future where personalized communication strategies and digital tools can overcome current implementation challenges for PROMs and ensure inclusivity to benefit all patients.
This work was presented as ‘Personalized communication for promoting implementation of Patient Reported Outcome Measures in clinical practice: Insights from health communication and digital sciences’ at the ISOQOL 2024 Annual Conference by Kelly de Ligt. She won the 2024 Student Oral Award for this work. The manuscript covering the presented views is published in the Journal of Medical Internet Research, available here: “Improving the Implementation of Patient-Reported Outcome Measure in Clinical Practice: Tackling Current Challenges With Innovative Digital Communication Technologies.”
The implementation of PROMs at the Netherlands Cancer Institute was presented by Prof. Lonneke van de Poll-Franse at the ISOQOL 2024 Annual Conference symposium on “Use of Patient-reported Outcomes in Cancer Clinical Practice: Case Studies from Europe and the United States.”
This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL.
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