Using Digital Health to Implement Patient-Reported Outcomes in Cancer Care

Claire Snyder, PhD, Johns Hopkins Schools of Medicine and Public Health, and Norah Crossnohere, PhD, the Ohio State University College of Medicine, discuss their work on implementing patient-reported outcome measures into cancer care, and how the PROTEUS Consortium is supporting these efforts, expanding on Dr Snyder’s presentation from the 2023 ASCO Annual Meeting.

Transcript:

Norah Crossnohere, PhD: My name is Norah Crossnohere. I'm an assistant professor in general internal medicine at the Ohio State University College of Medicine and the senior project scientist at PROTEUS Consortium. 

Claire Snyder, PhD: And I'm Claire Snyder. I'm a professor of medicine, oncology, and health policy and management at the Johns Hopkins Schools of Medicine and Public Health. And I'm the principal investigator of the PROTEUS Consortium. 

Please give us a brief summary of your ASCO presentation, “How do we use digital health to implement PROs in cancer care?”  

Dr Snyder: My ASCO presentation focused on implementing patient-reported outcomes in clinical care and how the PROTEUS Consortium is supporting these efforts. Patient-reported outcomes or PROs are patients' own reports of how they feel, function, and live their lives. PROs are measured using standardized validated questionnaires referred to as pro measures or PROMs. PROs are a powerful tool to amplify the patient voice in clinical practice. They can help facilitate patient-clinician communication, identify symptoms and other issues that might have otherwise gone unnoticed, inform patient management, increase efficiency, and improve outcomes such as symptoms, functioning, quality of life, and even survival in some cases. What I find particularly intriguing is emerging evidence that suggests that using PROs in clinical practice can help vulnerable populations even more. These are patients with less computer experience, less education, or who come from minority racial groups. While these results need to be confirmed, they show the promise of PROs to promote health equity. For this to occur, PROs systems have to be designed to bridge rather than widen the digital divide, which is where the PROTEUS Consortium comes in. PROTEUS is a consortium of over 50 patient, clinician, research, industry, health system, government, policy, and regulatory groups from the U.S. and internationally. PROTEUS, which stands for patient-reported outcomes tools, engaging users and stakeholders, helps navigate the use of PROs in clinical practice and in research studies. PROTEUS offers a range of freely available tools and resources on its website at the PROTEUSconsortium.org. These tools help ensure that the right PRO measures are used in the right patients to measure the right outcomes at the right time, and then on the back end, ensure that the PRO results are reported to patients and clinicians in a way that they can understand what the scores mean and use the PRO results to inform patient care effectively. 

What are the current key challenges or barriers to integrating PROMs into clinical practice? 

Dr Crossnohere: While PROMs have tremendous potential to promote patient-centered communication, care, and outcomes, it's critical to have user-friendly and functional PRO systems in place. This is easier said than done, and there are several challenges to designing and implementing PRO systems. At the patient level, accessibility or a lack thereof can be a barrier to successful PRO implementation. PRO systems are most often effective if they offer multiple modalities of administration that meet the needs of a healthcare system's patient. At the provider level, implementing a PRO system will likely result in a change to the established clinical workflow, which can be burdensome to address. Engaging clinicians along with other stakeholders in the design of a PRO system can help to identify and reduce these barriers from the get-go. At the administrative level, there are often concerns about the cost of a PRO system. Setting up a PRO system does require resources, but it's also possible that PRO systems can be cost savings, such as if it can be used to facilitate re-billable expenses or meet hospital quality standards. At the system level, it can be intimidating that there's no one-size- fits-all approach, including frozen care. However, this also presents an opportunity, as it allows systems to prioritize the aspects of PRO collection that are most likely to help them meet their own goals. 

What is the PROTEUS Consortium doing to address these challenges? 

Dr Crossnohere: Given that solutions and resources to address challenges vary across settings, PROTEUS has a number of initiatives that take different approaches to facilitate pro-use in clinical care. First, we recently published a practical guide for implementing PROs in care called The PROTEUS Guide to Implementing Patient-Reported Outcomes in Clinical Practice. This guide is available as both a PDF and interactive web tool on our website, thePROTEUSconsortium.org. This guide collates and synthesizes information from foundational resources to create a unified, comprehensive document that covers the key considerations for pro-system design, implementation, and management. Guidance provided in the PROTEUS Practice Guide is applicable to a broad range of health settings, from single practitioners to large group practices, outpatient to inpatient settings, and small clinics to large integrated health care systems. Options provided by the PROTEUS Practice Guide are seldom mutually exclusive, and it's often advisable to use multiple approaches. Another initiative led by the PROTEUS Consortium is the establishment of an advisory group focused on specifically addressing the challenges to using PROs amongst vulnerable and underserved patient populations. This group improved our understanding of the facilitators and barriers to implementing routine pro-assessments within these populations. Our hope is that this group will ultimately serve as a springboard to build capacity for pro- implementation and ultimately improve care for patients who are vulnerable and underserved. In summary, by partnering with stakeholders and developing resources to meet the needs of end-users, PROTEUS helps ensure that patients' own voices can be heard in their clinical care.