Addressing the Need for Remote Patient Monitoring Applications in Appalachian Areas
aa r X i v : . [ c s . H C ] F e b Addressing the Need for Remote Patient Monitoring Applications inAppalachian Areas
Alyssa Donawa, Corey E. BakerUniversity of Kentucky, Lexington, KY, USA
Abstract
There is a need to address the urban-rural disparities in healthcare regarding equal access and qualityof care. Due to higher rates of chronic disease, reduced access to providers, and a continuous decline in ruralhospitals, it is imperative that Appalachian cancer patients adopt the use of health information technology (HIT). TheNCCN Distress Thermometer and Problem List (DT) is under-utilized, not patient-centered, does not consider providerneeds, and is outdated in the current digital landscape. Digitizing patient distress screening poses advantages, suchas allowing for more frequent screenings, removing geographical barriers, and rural patient autonomy. In this paper,we discuss how knowledge gained from patient-centered design led to the underpinnings of developing a rural remotepatient monitoring app that provides delightful and insightful experiences to users.
Introduction
According to the National Cancer Institute, distress is an emotional, social, spiritual, or physical pain or sufferingthat may cause a person to feel sad, afraid, depressed, anxious, or lonely. Distress is highly prevalent in cancerpatients regardless of disease-stage or modality. In the case of cancer patients, untreated distress has been shownto lead to greater pain, reduced physical function, increased medical costs, and longer stays in the hospital. TheNational Comprehensive Cancer Network (NCCN) designed the
NCCN Distress Thermometer and Problem List (DT)to be used as a screening tool for recognizing distress in cancer patients; and has since been shown to accuratelyindicate distress. The DT was designed to improve patient care, which in turn would improve a patient’s quality oflife. Furthermore, studies have shown that routine distress screening is able to improve health outcomes includingmorbidity and mortality. A greater issue emerges when considering rural communities in the United States that are often medically underservedand medically disadvantaged, such as Appalachian Kentucky. Rural communities also commonly have higher rates ofchronic disease, reduced access to providers, and continue to experience a decline in rural hospitals.
5, 6
The aforemen-tioned disparities raise the urgency for rural communities to adopt the use of health information technologies (HIT).However, rural communities face geographical and financial challenges that result in limited or nonexistent accessto broadband connectivity. This “digital divide” limits the ability for rural communities to benefit from HIT.
4, 7
Inaddition, rural communities also have lower levels of overall technology adoption.
4, 8
In this paper, we discuss howknowledge gained from patient-centered design led to the underpinnings of developing a rural remote patientmonitoring app that provides delightful and insightful experiences to users.Methodology
In order to better understand how distress manifests for cancer patients with ties to rural Kentucky, four participatorydesign workshops were held between February and October of 2019 to gather input from local stakeholders. Theseco-design workshops gave community participants a way to directly contribute to the brainstorming, design, and low-fidelity prototyping of distress monitoring tools that would positively impact the cancer experience. We were ableto bring together various stakeholders from the Appalachian Kentucky and Lexington communities which includedmedical professionals, social workers, technologists, students, current and previous cancer patients, and researchers.Knowledge was gained regarding what stakeholders would like to see in HIT and distress screening tools. Understand-ing was also gained on the underlying holistic needs of Appalachian cancer patients; an example being that patientsmay feel embarrassed to discuss their distress symptoms out loud, which relates to the culture of self-sufficiency that isprevalent in Appalachian culture. Following the workshops, participants were invited to provide feedback on the DTand the digital translation of the DT utilizing the System Usability Scale (SUS). Community members at the MarkeyCancer Center and attendees of the Markey Cancer Center Affiliate Network (MCCAN) 2019 Cancer Care Conferencewere also invited to score the distress screening tools. The sample of people who scored the paper DT was n = 44 ,with 8 identifying as patients, 10 as caregivers, 11 as providers, and 15 as other. The sample of people who scoredhe digital DT was n = 34 , with 7 identifying as patients, 10 as caregivers, 8 as providers, and 9 as other. All usersreported that they preferred the digitized distress screening tools over paper tools; supporting our decision to convertcancer patient distress screening to a digital format for target users. Assuage - An App for Rural Health Care
Assuage is a HIPAA compliant mobile iOS application by researchers at the University of Kentucky (UK). An aimof Assuage is to enhance the process of distress monitoring in rural cancer patients with more frequent screening.Cancer patients at UK’s Markey Cancer Center complete the DT approximately every six weeks. By reducing the timebetween screenings, providers and researchers can better understand a patient’s overall distress, causes of distress, andtrack symptoms between visits. Assuage also seeks to facilitate patient provider communication. In the context ofAssuage, all DT components are referred to as “surveys”. Assuage offers the ability to choose from four different userinterfaces (UIs) in order to complete the routine distress assessment. The decision to offer multiple UIs was made withknowledge that Appalachians have not heavily adopted HIT, but are also not completely removed from modern every-day technologies, like cellphones. This takes a different approach than related work that seeks to overcome challengeswith rural cancer patients and information access, or daily life management following cancer diagnosis. In orderto ensure usability and routine completion of the distress assessment, multiple UIs are offered to gain understandingof patient preferences. While Assuage is still undergoing final iterations before the initial pilot, several of the currentfeatures include:
Health App Integration.
Assuage leverages Apple’s HealthKit, CareKit, and ResearchKit to provide an engagingexperience for both Patients and Doctors. Assuage is also able to collect information from any Bluetooth based sensor.The first time a user logs in to Assuage, they are prompted with the option to allow Assuage to gain access to datafrom the Health app. Following this step, users are launched into the Assuage app. Note that this will happen on thefirst installation and sign in of the Assuage app. Afterwards, users can manually change their preferences through theiriPhone’s general settings. Multiple UIs.
In order to solicit feedback on UI preferences, Assuage offers patient users the ability to choose fromfour different UIs in order to complete their routine distress assessment. The UIs differ by the way the surveys aredisplayed and navigated. (1) The
NCCN Advanced
UI implements a modularized view of the DT components. Userscan select cards corresponding to surveys; allowing for the most fluid navigation between sections. (2) The
NCCNStandard
UI guides patients sequentially through the surveys. Navigation is limited to next and back buttons. (3)The
NCCN Checklist
UI presents patients with the option to navigate sequentially through the surveys, similar to theprevious UI, or by selecting buttons with the associated survey labels. The latter allows for customized and moredirect navigation of surveys. The label/button associated with the current survey will be highlighted. (4) The
NCCNPaper
UI offers the smoothest transition for patients who prefer the standard paper DT. Patients take a photo of theirmanually completed paper DT using their device; and upload it in Assuage.
Wireless.
Assuage will be functional in a fully connected and intermittently connected network; addressing the bar-rier of limited broadband connectivity in Appalachian Kentucky by using device-to-device (D2D) communication thatutilizes the mobility of rural residents to maximize data delivery. Note that Assuage is not intended for use in medicalrelated emergencies requiring immediate attention, but for patient monitoring, feedback, and updates.
Future Work
While the primary goal of Assuage is to improve routine distress screening for rural cancer patients, we hope thatwith continued use rural patients will more readily adopt the use of other HIT. Future iterations of Assuage will bedesigned to have interfaces for non-patient users; the first priority being a care provider/doctor interface. A feasibilitystudy of Assuage with Appalachian patients is also necessary before moving forward with feature refinement. Wehope to leverage this desire for self-sufficiency coupled with the desire for improved health outcomes to incentivizethe sustained use of Assuage. eferences [1] Tara A Albrecht and Margaret Rosenzweig. Management of cancer related distress in patients with a hemato-logical malignancy. Journal of hospice and palliative nursing: JHPN: the official journal of the Hospice andPalliative Nurses Association , 14(7):462, 2012.[2] Brad Zebrack, Karen Kayser, Deborah Bybee, Lynne Padgett, Laura Sundstrom, Chad Jobin, and Julianne Oktay.A practice-based evaluation of distress screening protocol adherence and medical service utilization.
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