A user-centered need analysis of cancer patient navigation – an intersection of collaborative work and collaborative health IT
TimeThursday, April 1512:50pm - 1:10pm EDT
Modern cancer treatment is finally showing progress toward defeating cancer, and has also created great complexity in the range of pathways an individual patient may take. Issues associated with insurance coverage add further to patient experiences, and present barriers to treatment for many patients. The psychosocial web of support available to patients and informal caregivers is typically poorly integrated (or ignored) into the treatment plan process. Finally, systemic health disparities have lead to wide variability in individual patient experiences, independent of diagnosis. Individuals with low income, minority status, or other marginalized populations (e.g., LGBTQ, non-English speaking), with disabilities, and/or who live in under-resourced geographical areas encounter additional barriers in gaining access to, and fully engaging with cancer healthcare services. Together these barriers can result in lowered patient satisfaction, treatment participation and adherence, leading to poorer outcomes.
An emerging intervention strategy to address this problem is using human patient navigators who apply knowledge of the care process identifying the patients’ challenges guiding the patient to chart a path through the cancer care continuum. Patient navigation interventions have come to be implemented in widely different ways, creating a situation where navigation programs are increasingly widespread, but navigation experiences are often incomplete and patch-worked.
Patient navigation is a new space for human factors in health care, but one that builds on growing interest to support multiple types of care transitions. It also builds upon a recognized need to create health IT interventions which span clinical, home, and community-based settings as well as those that span clinical, patient, and allied health professional work. In other words, it focuses on both collaborative work and collaborative health IT, both seen as cutting-edge application areas for HFE and health informatics. We have embarked on research to explore creating integrative support for navigators and patients via a mobile-health support tool. This presentation focuses on the initial results for identifying digital health support needs, based on data collected from the perspective of cancer patient navigators.
We applied a multifaceted human factors approach based on a user-centered participatory design process, focused by a literature review and domain analysis. We conducted a scoping review of the literature on cancer patient navigation processes and programs, their outcomes, and information technology uses. The corpus was drawn from searches in both health sciences, informatics, and engineering databases. Our domain analysis incorporated the literature findings, as well as data obtained from two highly experienced professional cancer patient nurse navigators participating as subject matter experts within the research team. The needs analysis was done from a convenience sample of 10 working patient navigators in Virginia in the USA, recruited through a semi-formal professional networking organization for cancer patient navigators. The data were collected by a combination of focus groups and individual in-depth interviews (IDIs), under the cognizance of the University of Virginia Health Sciences Research IRB. The data were collected via phone and on Zoom because of the Covid-19 pandemic. All focus groups and IDIs were recorded, transcribed, de-identified, and analyzed using qualitative content analysis and persona development.
Sixty-two articles were identified as relevant and reviewed. Nineteen were systematic reviews, and 31 were original research covering cancer navigation program description, implementation, and/or assessment. All of the navigation programs reported on consisted of human navigators only (rather than any technology augmentation). Seven articles did deal with technology support, though in a prospective way. The results of the review were primarily used to scope the needs analysis and to inform the design of the navigation support system. Building on the literature review, the domain analysis identified the primary activities of patient navigators:
• Assessing patients for barriers to treatment and recovery, including financial toxicity, social issues, transportation barriers, communication with healthcare providers, and coordination/logistics;
• Providing support for patients to surmount barriers, often in the form or connecting patients to resources able to provide support on one specific barrier/issues;
• Educating patients regarding their cancer, its treatment, and resources available to deal with specific problems/issues; and
• Coordinating and networking with other parts of the cancer care system and with external support resources.
It also exposed that navigators may have diverse backgrounds (e.g., nursing, social work, volunteer training) and work in an array of organizational relationships ranging from employees of a single health system to unaffiliated free-lancing. It also made clear that for navigators who have clinical credentials, interacting with electronic health records make up a significant part of their work.
The needs analysis IDIs then provide individual perspectives on navigation as work, and on their problems, needs and desired areas of technological support. The content analysis of that data identified additional levels of detail to the largely behavioral domain analysis dimensions. It provided insight on the cognitive aspects of navigation, for example defining navigators’ specific goals and tasks when interacting with EHRs. It also added cognitive activities and knowledge structures that integrated and connected the different navigation activities. Primary among these was the on-going assessment of the patient’s emotional state, and the form and content of a mental model of each patient that was being supported. Finally, the IDIs pointed out the large degree to which the course of navigation arises from the needs, characteristics and behaviors of individual patients, ranging from literacy levels that contextualize what kind of educational materials should be provided, to patient usage of out-of-system providers for various aspects of treatment or testing, which create secondary and tertiary needs for the navigator to chase down the results of those activities and to coordinate with both in-system and out-of-system providers and navigators in that process. The presentation will include a full summary of the needs analysis, and its implications for functional design of the support system for navigators and patients.
Current and future research
A parallel needs analysis data collection from cancer patients regarding their perspective on navigation and technological support needs is underway. We expect that data analyzed by the symposium, and will present and relate it to the navigator. The functional and user interface/experience design will proceed in the next phase of the research, via a participatory process with navigators and patients.
Take away Points:
Patient navigation is a new area for human factors, but a direct extension of current research areas.
The cancer patient navigator role is both complex and highly variable.
Underlying cognitive a knowledge aspects of navigation are a novel finding of our research.