Skip to main content
Download PDF

Closing the patient-provider gap along the surgical journey one click at a time: results of a phase I pilot trial of a patient navigation tool

BMC Digital Health volume 1, Article number: 52 (2023) Cite this article

Abstract

Background

Patients diagnosed with complex hepato-pancreaticobiliary (HPB) conditions experience a challenging journey through the healthcare system. Patient navigation is commonly offered to patients and their caregivers throughout this process. Here, we report on the development and phase I testing of a prototype web-based dual (patient and provider) navigation application ‘PatientNav.’

Methods

Evidence-based recommendations were determined through a needs assessment. The PatientNav app was designed to be a highly customizable tool based on the needs of the patients, the care team, and the characteristics of the institution. Our phase I pilot trial targeted adult patients who reported the capacity to use a mobile app or desktop website presenting to our HPB transplant clinic at MedStar Georgetown University Hospital/Lombardi Comprehensive Cancer Center over two months. Usability, functionality, and reliability testing were conducted by applying multiple strategies, including biometric data analysis, task completion, questionnaires, and interviews.

Results

Out of 22 patients, 18 (81.8%) completed the in-app survey whose responses were included in the analysis. The usability rate of PatientNav among patient app users was 95.4%. Among patient app users who completed the in-app survey questionnaire, 66.6% reported that the content in the PatientNav app was relevant. In terms of the app's reliability, none of the patient app users reported technical issues with accessing PatientNav throughout the study period. To further elucidate the characteristics of individuals who exhibited high usage of the PatientNav assigned task functions, we divided our cohort based on the median number of tasks used (N = 75 total tasks). The univariable comparison showed that high function users were older, with a median (IQR) age of 61.5 (57.8, 71.3) compared to 52.2 (34.5, 65.7) years among low function users. No differences were observed based on gender, racial distribution, living condition, or occupation. However, 41.7% of low function users had Medicare/Medicaid insurance, whereas all high function users had private or combined insurance.

Conclusion

Our phase I pilot study showed that PatientNav is a feasible, usable, and functional technological tool that enables patients with complex HPB diagnoses and their care team to interface in real-time using patient-reported outcome measures (PROMs). PatientNav is a reliable tool that can be used by clinical and support staff to help navigate patients through surgery and aftercare and by patients to assist in navigation and self-management.

Trial registration

The trial was registered at ClinicalTrials.gov; Registration number: NCT04892927; date of registration: 5/19/2021.

Peer Review reports

Introduction

Patients diagnosed with complex hepato-pancreaticobiliary (HPB) conditions experience a challenging journey through the healthcare system. Throughout the process, patients manage complex administrative tasks of accessing care while experiencing physical and psychosocial effects [1, 2]. Before and after surgery, patients commonly experience pain, stress, difficulty eating and sleeping, and other symptoms [3, 4]. Psychosocial concerns include financial issues, reduced quality of life, and barriers to accessing care [5,6,7]. Research has demonstrated a vital opportunity to improve care coordination and clinical management of patients throughout their multi-modal treatment approach [8, 9].

From the clinician perspective, care of complex HPB patients involves a high level of coordination between the different specialties providing care, such as medical and radiation oncology, interventional radiology, gastroenterology, pathology, surgery, and other ancillary services (nutrition, social work, physical therapy, and patient navigators). The process entails focusing on the proper transition of care and communication between the different personnel involved, as well as timely decision making [10,11,12].

Patient navigation is commonly offered to patients and their caregivers throughout this complex journey. Navigation has been shown to reduce psychosocial burdens and potentially improve efficiency and cost-effectiveness in the cancer treatment system [13,14,15]. However, standardizing patient navigation as a reliable tool to address their needs has yet to be fully accomplished. By enhancing real-time communication with patients and streamlining administrative transactions related to care coordination, a patient navigation app has the potential to improve care coordination and reduce the cognitive burden of cancer care providers as well [16, 17].

The standardized ‘Patient Reported Outcomes Measurement and Information Set (PROMIS)’ developed by the National Institutes of Health (NIH) has introduced the value of capturing patient experience reports through researcher-developed platforms [18,19,20]. Several apps with a wide range of functionalities are available to patients through cancer management apps available in the marketplace [21,22,23,24]. To our knowledge, no dual-facing navigation apps are available that integrate clinical and/or administrative information and facilitate communication between the patient, caregivers, and clinical team.

In this study, we developed and tested a prototype web-based navigation application ‘PatientNav.’ The app has dual (patient and provider) features designed to be integrated with a major electronic health record (EHR) platform, Cerner Millennium, through its open developer’s platform, Cerner Sandbox, using Fast Healthcare Interoperability Resources (FHIR) standards. The app enables the collection of clinical health data, patient-reported outcomes, push features for patient education, and tracking. In this paper, we report on phase I of the study, which evaluated the app in multiple domains: usability, functionality, and reliability.

Methods

Needs assessment and conceptual framework development

The PatientNav app was designed based on a thorough needs assessment process. Professional standards, accreditation, and standard performance measures have achieved some consensus on essential activities of navigation (Table S1) [25,26,27]. Essential activities identified to be targeted by our app included the coordination of services and identifying and addressing individualized patient needs along their cancer care journey.

From the patient’s perspective, highly valued navigation activities included communication, defining provider care roles, providing access to information and emotional support to family/friends and caregivers (Table S2) [6, 10, 12, 28]. Navigation activities were also tailored to have value to multiple stakeholders, including payers and hospitals (Table S3) [29,30,31,32,33,34]. This value can be demonstrated by tailoring the navigation app to influence the use of services and patient experiences, potentially making it a driver of public ratings, revenue, and market positioning. The study is registered in the NIH Clinical Trials database #NCT 04892927.

PatientNav app design

Based on evidence-based recommendations determined throughout our needs assessment, the PatientNav app was designed to be a highly customizable tool based on the needs of the patient, the care team, and the characteristics of the institution. The development process was carried out under a multidisciplinary research and advisory team's guidance, including technology specialists, oncologists, surgeons, patients, and nurses. The resultant decision-making process for the final app design is summarized in Table S4. The app and user-derived information are expected to improve patients’ clinical and psychosocial experiences, as well as improve efficiency and continuity of care through better outpatient clinic planning and handoffs, as well as enhanced timeliness in responding to patient concerns and tracking their recovery.

PatientNav software was designed by GMG ArcData LLC®, a software development company that provides user-centered software designs through data analytics solutions and implementation. The app enables care team members to adjust care based on patient-reported indicators such as pain, changes in wound status, and reduction in patient activity and monitor administrative indicators needed to improve efficiency and continuity of care. Through ‘task assignment,’ care team navigators can push videos and educational material to patients who can view and complete the tasks (Fig. 1). Tasks include, but are not limited to, providing education to patients, scheduling or coordinating appointments, communicating with clinicians and coordination care planning. Patient-reported measures were incorporated into the app as tasks that can be assigned included Patient Health Questionnaire (PHQ) 2 and 9 for depression, pain assessment scale, and Surgical Recovery Scale (SRS-13 Fatigue) [35]. Educational material appropriate to each phase of care was assigned for patients to review through the PatientNav app. These were divided into an introduction, nutrition, surgery preparation, post-surgery care, and wound care (Table S7). The process of assigning education material was integrated into the clinic schedules during the pre-operative phase or into discharge planning in the postoperative phase. The clinical care team, including the surgeon, reviewed available educational materials and matched them appropriately to the patient's stage in their care journey. Care team members can access a “provider platform” daily and track patient vitals, weight, task completion, image uploads, etc. The “provider platform” allows care team members to observe trends over three days with abnormal values that require immediate attention highlighted in red (Fig. 2).

Fig. 1
figure 1

PatientNav patient navigator platform view showing daily tasks assigned by the provider (left: vital signs and walking) and sample task completion (right: temperature and photo upload)

Full size image
Fig. 2
figure 2

PatientNav care team navigator platform view showing daily task tracking. “Maxwell, Hazel” is an alias used for demonstration that represents an individual participant

Full size image

Patient population and recruitment

Our phase I pilot trial targeted individuals aged 18 years or older who reported the capacity to use a mobile app or desktop website presenting to our HPB transplant clinic at MedStar Georgetown University Hospital/Lombardi Comprehensive Cancer Center over two months. Inclusion criteria also included individuals who can read and understand English and plan to continue follow-up at our institution. The informed consent process for the study began during the initial clinic visit, where the research coordinators explained the study and addressed questions. Before downloading, participants received information about the study and the app's functionalities. Screening for participation in the trial was extended to 26 patients by two research coordinators who were present at the time of their initial clinic visit. Individuals who agreed to participate were instructed to download the app. Informed consent documents were sent through the app, and 22 patients were eventually recruited for participation in our phase I trial (Fig. 3). One patient out of 22 did not complete any assigned tasks or participate in the virtual interviews. The decision to distribute informed consent documentation after the app download was made to ensure participants comprehensively understood the study and their involvement before consent.

Fig. 3
figure 3

Schematic diagram representing phase I pilot study timeline: PatientNav app development, trial design, and data analysis

Full size image

Evaluation techniques: usability, functionality, and reliability assessment

As PatientNav is a dual-facing app, we aimed to evaluate if the app is usable for both patient users and care team navigators. A third party designed and performed evaluation techniques based on validated methods to minimize designer and researcher bias [36,37,38,39]. Usability testing was conducted by applying multiple strategies, including biometric data analysis, task completion, questionnaires, and interviews. Functionality and reliability testing assessed whether the intended functions can be successfully executed through the app. Assessment techniques included basic navigation tasks, self-monitoring (vitals, drain log), self-management education, and other functions. Survey questionnaires were created based on the System Usability Scale (SUS), where participants were asked to score ten items with one of five responses (Table S5) [40]. These questionnaires were pushed through the app and completed by patient app users. After completion of the study, a nurse and a research coordinator carried out virtual interviews. Virtual interviews were not conducted through the PatientNav app, and instead, separate interviews were scheduled using video conferencing platforms or video phone calls as per participant preferences and accessibility.

Data collection and analysis

Baseline demographic and socioeconomic patient characteristics were collected from patients’ electronic medical records (EMR). Biometric data were extracted from the app (temperature, blood pressure, weight, walking input) as well as data points on logging-in attempts, use of education material, completion of assigned tasks, and in-app surveys. The extracted logged data and questionnaire responses were analyzed using descriptive statistics. Virtual interviews were transcribed verbatim and were analyzed using qualitative content analysis by two members of the research team (provider and research coordinator).

Results

Patient demographics and socioeconomic characteristics

The median age of our cohort was 59.8 years, with the majority (59.1%) being male. Ten patients (45.5%) were white, and seven (31.8%) were African American. More than half of the recruited patients were married and lived with a spouse or partner (68.2%); four individuals were single, and three (13.6%) lived alone. Most patients (68.2%) had private insurance coverage, five (22.7%) received coverage through Medicare/Medicaid programs, and two (9.1%) had combined benefits. The occupation of patient participants was diverse and included five individuals with vocational professions (one airplane pilot, two engineers, one teacher, and one nurse), four managerial or business owners, and the remainder led jobs in the technical or service industry (police officer, web design, elderly home caregiver, cashier, waitress, homemaker) (Table 1).

Table 1 Demographic and socioeconomic characteristics of the overall cohort (N = 22)
Full size table

Clinical characteristics, services, and peri-operative management

Out of 22 patients who consented to participate in the trial, 17 (77.3%) were referred by providers within our institution. Fourteen patients (63.6%) were diagnosed with malignancy (pancreatic, hepatic, or biliary/gallbladder cancer). The median time from diagnosis to the first visit at our HPB transplant clinic was 10.5 days. The median time to undergo surgery after the initial clinic visit was 33 days. Most patients underwent interventional procedures before surgery, most commonly endoscopic retrograde cholangiopancreatography (ERCP) and stent placement (59.1%). The surgical procedures performed are listed in Table S6.

The median length of stay was five (3.5, 13) days; eight (36.3%) had a complication in the perioperative period. Four patients (18.1%) were readmitted within 30 days. The median time to follow up in the clinic after discharge post-surgery was 21 days.

Usability assessment

The usability rate of PatientNav among patient app users was 95.4%. Out of 22 patients, 18 (81.8%) completed the in-app survey whose responses were included in the analysis. Most patient app users reported that logging into PatientNav was easy (83.3%), with 66.6% reporting that navigating PatientNav features overall was easy (33.4% reported somewhat easy) (Fig. 3).

Of 22 patient app users, 45–55% utilized educational material introducing tasks that would be assigned after surgery. A slightly higher proportion of surgery preparation education material was used, with the most viewed features being “Are You Packed? What to Take to the Hospital” (77.2%) and “Tips for Family and Friends” (63.6%). Regarding task functions, Table S7 demonstrates the total number of patients who utilized each assigned task function. The daily assigned task use rate was notably highest for weight (80.9%) and walking input (90.4%).

Usability assessment among care team navigators was also evaluated through interviews with the surgeon, staff member, and research navigator. The different care team members considered the app simple to use and "just needed to get used to it at first like any other app; then it was straightforward." However, some reported that task assigning could have been more straightforward and would prefer to have a better description of the content of each task function to determine which tasks best suited the needs of each patient (Table S8).

Functionality and reliability assessment

Among patient app users who completed the in-app survey questionnaire, 66.6% reported that the content in the PatientNav app was relevant (Fig. 4). Validity of the app content was also highlighted through patient interviews invariably expressing the specific value of videos recorded by surgeons on steps of the surgical procedure.

Fig. 4
figure 4

Graphic representation of patient responses to the in-app survey questionnaire completed at the end of the study for usability assessment (Total responders: 18 patient navigators)

Full size image

The functionality of the app was also evident, with 83.3% of users uploading wound or drain images correctly and maintaining a daily self-managed drain log (50%). One of the patients highlighted the value of uploading images through the app for himself and his caregivers: "I live 1.5 h away. How else can they tell what’s going on? Photos are helpful. I’m 67 years I had a support team, a wife, and a daughter. They got the data into the computer for me. I don’t have to be savvy." However, other patients found a limited value of the image upload function: " My incisions were all glued – skin glue. I did not need to upload images.” Regarding communication between patient app users and the care team, 55.5% of patient users believed that PatientNav helped them connect with their providers easily (Table 2). However, most patient app users commented that having more “check-in ability” or “feedback loops” would be more helpful.

Table 2 Summary of online virtual interview responses assessing patient overall impressions of PatientNav usability. Representative responses are displayed as positive, neutral, or negative input
Full size table

Furthermore, surveys assigned as tasks tailored to patient needs (Depression PHQ2, pain, and SRS-13 Fatigue survey) were accessed and filled at 100%, 94.1%, and 90.4%, respectively (Table S7). Patient app users emphasized during virtual interviews that these assigned survey tasks were beneficial in “understanding what to expect.” Other patient app users mentioned: "The question that was really helpful was about my feeling. It helped me understand how I feel every day" and “anxiety levels go down with understanding."

Regarding the app's reliability, none of the patient app users reported any technical issues accessing PatientNav throughout the study period. One of the patient participants mentioned during the virtual interviews that their favorite part of PatientNav is how easy it is to use: “It's not cumbersome. It's one-stop, I hit the button, and there it is. It's very easy to access." (Table 2).

A qualitative assessment revealed that patients relied on reminder prompts through the app to log their daily input "The app helps me be more diligent rather than lazy. I get my email reminder, which makes tracking a lot easier." In addition, there were patient-specific experiences that also reflected the reliability of PatientNav functions in communicating with the healthcare team: “One time, I put my blood sugar (109) in the temperature section. I got a call the next day because they thought I had a fever”; "The app probably saved my life. My surgeon put me back into the hospital. She saw the pictures of the drain I was uploading. She called immediately and told me to come to the hospital."

Care team navigators were overall satisfied with the functionality of the app. They were able to review data and images in an organized and timely manner. Regarding efficiency and workload, care team navigators commented that "putting everything in one place would save everyone a lot of time." When asked for feedback on improving PatientNav functions, the staff member navigator suggested connecting the app to the EMR system to schedule surgeries and book appointments through the app (Table S8).

Subgroup analysis: high vs. low assigned task use

To further elucidate the characteristics of individuals who exhibited high usage of the PatientNav assigned task functions, we divided our cohort based on the median number of tasks used (N = 75 total tasks). The total number of tasks not only reflects the number of unique tasks assigned to each user but also accounts for the multiple times users completed each task (numerous entry points) over the duration of the study. Individuals with a total number of tasks used < 75 were grouped into low function usage (N = 12); those with total tasks used ≥ 75 were considered high function users (N = 9) (Fig. S1). Among low function users, the number of tasks used ranged between 4 and 45 data point entries, whereas among high function users, the number of tasks used ranged between 76 and 485. The univariable comparison showed that high function users were older, with a median (IQR) age of 61.5 (57.8, 71.3) compared to 52.2 (34.5, 65.7) years among low function users. No differences were observed based on gender, racial distribution, living condition, or occupation (Table S9). However, 41.7% of low function users had Medicare/Medicaid insurance, whereas all high function users had private or combined insurance.

Discussion

Our PatientNav app is an innovative digital application that serves as a 2-way communication tool between patients and providers based on validated patient-reported outcome measures that allow a patient-centered approach during the cancer care journey. This pilot study is a phase I trial aimed at evaluating the dual-facing PatientNav app using identified standards of usability, functionality, and reliability among two end-users: patient and provider navigators.

The findings in our pilot study highlight the potential of PatientNav in improving patient experience, satisfaction, and efficiency of care. A high overall usability rate of 95.4% was observed, with 100% of users reporting that using PatientNav was easy or somewhat easy, comparable or more increased to other studies [41, 42]. Notably, users expressed their satisfaction with the app's educational material, specifically video uploads before and after surgery. Patient app users completed daily tasks assigned by the care team, with the highest use noted for easily quantifiable measures such as weight (80.9%) and walking distance (90.4%). Utilizing the PatientNav app fostered patient-provider connection, enhancing self-care commitment and deepening comprehension of emotional and physical well-being, with patients expressing interest in incorporating a notification feature indicating provider data review. To manage patient expectations and enhance transparency in the communication process, we have implemented a notification feature in the app as part of phase II that informs patients when their messages have been reviewed by the care team, even if a direct response is not provided. This feature assures patients that their data has been seen and considered. It is essential to highlight that the PatientNav app is not intended to replace urgent medical attention for critical situations. Patients were educated during the initial clinic visit and through educational materials within the app about the importance of contacting their care team directly by phone or seeking medical attention in case of emergent needs, especially if there’s a potential risk to their health or well-being. Finally, we plan to establish clear response protocols for the care team, defining which messages require immediate attention and establishing specific timeframes for addressing other messages, ensuring effective communication between the care team and patients.

A vital component of the study was user feedback which played a pivotal role in refining the app's usability and functionality, driving its evolution for the upcoming phase II trial. Expectedly, patients were more likely to use the features in the app and complete assigned tasks when they were tailored to individual needs. For instance, patient users who did not complete the assigned task of uploading an image of their wound or drain reported that they did not need to perform the task. Furthermore, Depression PHQ2 and SRS-13 Fatigue surveys assigned as tasks tailored to patient needs were more likely to be accessed and filled by patient app users. These findings emphasize the importance of a patient-centered approach in assigning tasks through PatientNav that are individualized to the needs and situations of each patient. While manually assigning tasks provided flexibility and personalization, it could benefit from more efficient ways of matching tasks to patient needs, including options for patient input in selecting tasks that align with their preferences and requirements. Future updates involve iterative improvements to the user interface and data analytics tools to enhance provider utilization of information for education, individualized task assignments based on patient needs, and communication prioritization.

Socioeconomic features of end-users are considered a crucial element for the usability and functionality evaluation of a technological application, as evidenced by the increasing evidence in the literature on disparities in access to equitable healthcare services and outcomes [43, 44]. A racially diverse group was included in our study as well as a wide variety of occupations (airplane pilot, engineer, cashier, waitress, etc.) that can serve as a surrogate for education status. Furthermore, our subgroup analysis revealed that participants successfully navigated PatientNav regardless of their marital status, living condition, comorbidities, or occupation. Interestingly, older individuals were more likely to have a higher use rate of app features. In addition, older individuals almost always had a family member or a caregiver, which emphasizes the potential of PatientNav to be a supportive tool for the caregiver in documenting their care to patients and communicating with the provider team.

A core element of our study was including input from care team navigators in the usability and functionality assessment of the app. Navigators of the care team expressed that PatientNav was easy to use after a short training course. Care team navigators volunteered their time for phase I of this study; they expressed their belief that PatientNav is valuable for remote patient monitoring and focusing on the concerns and matters that must be addressed. Even though tasks were assigned manually, it was regarded as necessary for the workflow process to improve efficiency further. Furthermore, the PatientNav app allowed the care team to perform daily monitoring of their patients post-operatively and provide more efficient pre-operative teaching and post-operative instructions. A particular area of improvement highlighted by the care team was improved automation of task assignments that would be even more time efficient. In addition, designing 2-way communication through the app connected to the EMR can improve communication and decrease workload if implemented, allowing organizing patient concerns and follow-up and reducing the inefficiency of tracking patients through phone calls and avoidable clinic and ER visits.

While it is true that certain features we have implemented can be found in other apps (PittPHR, TouchStream, Carer Guide, GenieMD), our PatientNav app fills a specific gap in the market by integrating validated patient-reported outcome measures (PROMs) [23, 24, 41, 42]. Incorporating PROMs distinguishes our app from others by providing a standardized and evidence-based approach to monitoring patient outcomes and well-being. Furthermore, our thorough needs assessment (Table S4) was based on input and limitations published by other apps providing a 2-way communication tool between patients and providers. The prospective nature of our study with planned phases II and III will include randomization and adjustments to the app design in each phase. A 2019 usability study of the PittPHR app integrated app-collected personal health data with hospital records [41]. The PittPHR app includes six functional areas, health records, patient history, patient tracking, contacts, appointments, and resources. Researchers at Duke Health enabled their EPIC-based EHR to be interoperable with both patient-facing and provider-facing apps using the Substitutable Medical Apps & Reusable Technology on the FHIR approach. We acknowledge the importance of interoperability and consolidation of available tools with electronic software at a system level in improving efficiency in the coordination of patient care.

There are several limitations inherent to this study that should be acknowledged. First, the phase I trial and the needs assessment and app design process took place amidst the COVID-19 pandemic with difficulty recruiting participants due to decreased volume of elective surgery. Adopting and incorporating virtual meeting platforms in our study design was essential in mitigating these challenges. Informed consent for research participation and survey questionnaires obtained through the app open the horizon to a new era of designing and conducting research in a challenging setting. Second, the design and dissemination of novel technological tools have an inherent disparity bias based on race, language, and health literacy. While our study attempted to account for health equity with a diverse racial and socioeconomic participant group, definitive correlations could not be obtained with a small cohort. Future studies with a larger cohort would allow tailoring app features to specific patient needs and individualized care plans. Third, the study was limited to a narrow range of provider specialties. This reinforces the need for full integration with provider workflow to allow for better access and communication with the multidisciplinary team involved in cancer care for each patient. Finally, the study participants were employed and had a higher education level, which may not accurately represent the broader population of patients or individuals in caregiving roles, limiting the generalizability of our study.

Addressing limitations identified in phase I of this study will shape our future directions and develop a sustainability plan for phase II implementation. A limitation in our study is the multi-step endeavor needed for integrating the PatientNav app with the electronic health record, which has been successfully demonstrated by recently published app designs that demonstrated the feasibility of EHR integration. Addressing this limitation in future studies will allow us to demonstrate further advantages, especially for care team workflow and patient experience. Furthermore, our phase II study design will address recruiting more study participants, comparing patient-reported outcomes to a control group, and evaluating specific outcomes such as delays in care delivery.

Conclusion

PatientNav is a mobile-ready application designed by a multi-disciplinary team based on the needs of patients and their providers that still need to be added to current practice. Our phase I pilot study showed that PatientNav is a feasible, usable, and functional technological tool that enables patients with complex HPB diagnoses and their care team to interface in real-time using PROMs. PatientNav is a reliable tool that can be used by clinical and support staff to help navigate patients through surgery and aftercare and by patients to assist in navigation and self-management. The modular design of the app allows flexibility within the tool to tailor tasks to individual patient needs. Our results highlight a significant opportunity for hospital administrators, healthcare providers, and stakeholders to implement user-centered tools of greater quality that address the unmet needs to close the gap between patients and their care team. Limitations identified in this study are particularly valuable for phase II of the project, which will test scalability, interoperability, and additional outcomes measurement, including cost-effectiveness.

Availability of data and materials

The study protocol, consent forms, and individual participant data collected during the trial (after de-identification) are available on request from the corresponding author to anyone who wishes to access the data. Instructions for anonymous evaluation of the PatientNav app are provided in Supplementary File 2. Supplementary File 2 includes statement declaring permission to use company logo.

References

  1. Spencer JC, Samuel CA, Rosenstein DL, et al. Oncology navigators’ perceptions of cancer-related financial burden and financial assistance resources. Support Care Cancer. 2018;26(4):1315–21.

    Article  PubMed  Google Scholar 

  2. Shoucair S, Blitzer D, Kumar Gupta V, McCarron EC. Hospital Readmissions and Infectious Complications Post Pancreaticoduodenectomy: An Analysis of 3,935 Patients from the American College of Surgeons NSQIP Database. J Am Coll Surg. 2020;231(4):S160.

    Article  Google Scholar 

  3. Jiang HY, Kohtakangas EL, Asai K, Shum JB. Predictive Power of the NSQIP Risk Calculator for Early Post-Operative Outcomes After Whipple: Experience from a Regional Center in Northern Ontario. J Gastrointest Cancer. 2018;49(3):288–94.

    Article  CAS  PubMed  Google Scholar 

  4. Wancata LM, Billingsley KG, Pailet J, Mayo SC, Sheppard BC, Hansen L. The patient’s perspective: a qualitative study of individual experience with decision-making, treatment, and recovery for resectable pancreatic cancer. Support Care Cancer. 2022;30(3):2581–9.

    Article  PubMed  Google Scholar 

  5. Jajja MR, Mustansir F, Nadeem SO, Lovasik BP, Blair CM, Sarmiento JM. Counting the cost: financial implications of complications following pancreaticoduodenectomy. HPB (Oxford). 2022;24(7):1177–85.

    Article  PubMed  Google Scholar 

  6. Tran Y, Lamprell K, NicGiollaEaspaig B, Arnolda G, Braithwaite J. What information do patients want across their cancer journeys? A network analysis of cancer patients’ information needs. Cancer Med. 2019;8(1):155–64.

    Article  CAS  PubMed  Google Scholar 

  7. Janda M, Neale RE, Klein K, et al. Anxiety, depression and quality of life in people with pancreatic cancer and their carers. Pancreatology. 2017;17(2):321–7.

    Article  PubMed  Google Scholar 

  8. Beesley VL, Janda M, Burmeister EA, et al. Association between pancreatic cancer patients’ perception of their care coordination and patient-reported and survival outcomes. Palliat Support Care. 2018;16(5):534–43.

    Article  PubMed  Google Scholar 

  9. Hopstaken JS, van Dalen D, van der Kolk BM, et al. Continuity of care experienced by patients in a multi-institutional pancreatic care network: a pilot study. BMC Health Serv Res. 2021;21(1):416.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Hohmann NS, McDaniel CC, Mason SW, et al. Patient perspectives on primary care and oncology care coordination in the context of multiple chronic conditions: A systematic review. Res Social Adm Pharm. 2020;16(8):1003–16.

    Article  PubMed  Google Scholar 

  11. Mitchell E, Alese OB, Yates C, et al. Cancer healthcare disparities among African Americans in the United States. J Natl Med Assoc. 2022;114(3):236–50. https://doi.org/10.1016/j.jnma.2022.01.004.

  12. Tan CHH, Wilson S, Mcconigley R. Experiences of cancer patients in a patient navigation program: a qualitative systematic review. JBI Database System Rev Implement Rep. 2015;13:136–68.

    Article  PubMed  Google Scholar 

  13. Bernardo B, Zhang X, Hery C, Meadows R, Paskett E. The efficacy and cost-effectiveness of patient navigation programs across the cancer continuum: a systematic review. Cancer. 2019;125(16):2747–61.

  14. Enomoto LM, Fenstermaker J, Desnoyers RJ, et al. Oncology Navigation Decreases Time to Treatment in Patients with Pancreatic Malignancy. Ann Surg Oncol. 2019;26(5):1512–8.

    Article  PubMed  Google Scholar 

  15. Gervès-Pinquié C, Girault A, Phillips S, Raskin S, Pratt-Chapman M. Economic evaluation of patient navigation programs in colorectal cancer care, a systematic review. Health Econ Rev. 2018;8(1):12.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Kline RM, Rocque GB, Rohan EA, et al. Patient Navigation in Cancer: The Business Case to Support Clinical Needs. J Oncol Pract. 2019;15(11):585–90.

    Article  PubMed  Google Scholar 

  17. Day S, Shah V, Kaganoff S, Powelson S, Mathews SC. Assessing the Clinical Robustness of Digital Health Startups: Cross-sectional Observational Analysis. J Med Internet Res. 2022;24(6):e37677.

    Article  PubMed  PubMed Central  Google Scholar 

  18. HealthMeasures Clearinghouse. Introduction to PROMIS. https://www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis. Published 2020. Accessed 23 Oct 2020.

  19. Kouzy R, Abi Jaoude J, Lin D, et al. Patient-Reported Outcome Measures in Pancreatic Cancer Receiving Radiotherapy. Cancers (Basel). 2020;12(9).

  20. Rendell VR, Siy AB, Stafford LMC, Schmocker RK, Leverson GE, Winslow ER. Severity of Postoperative Complications From the Perspective of the Patient. J Patient Exp. 2020;7(6):1568–76.

    Article  PubMed  Google Scholar 

  21. Birkhoff SD, Cantrell MA, Moriarty H, Lustig R. The Usability and Acceptability of a Patient-Centered Mobile Health Tracking App Among a Sample of Adult Radiation Oncology Patients. ANS Adv Nurs Sci. 2018;41(3):243–59.

    Article  PubMed  Google Scholar 

  22. Boceta J, Samper D, de la Torre A, Sánchez-de la Rosa R, González G. Usability, Acceptability, and Usefulness of an mHealth App for Diagnosing and Monitoring Patients With Breakthrough Cancer Pain. JMIR Cancer. 2019;5(1):e10187.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Gustavell T, Langius-Eklöf A, Wengström Y, Segersvärd R, Sundberg K. Development and Feasibility of an Interactive Smartphone App for Early Assessment and Management of Symptoms Following Pancreaticoduodenectomy. Cancer Nurs. 2019;42(3):E1-e10.

    Article  PubMed  Google Scholar 

  24. Loh KP, Ramsdale E, Culakova E, et al. Novel mHealth App to Deliver Geriatric Assessment-Driven Interventions for Older Adults With Cancer: Pilot Feasibility and Usability Study. JMIR Cancer. 2018;4(2):e10296.

    Article  PubMed  PubMed Central  Google Scholar 

  25. American College of Surgeons Commission on Cancer. Optimal Resources for Cancer Care 2020 Standards (Effective January 2020). Published 2020. Accessed.

  26. website ACoSCoC. Commission on Cancer website. In. 2020. https://www.facs.org/quality-programs/cancer/coc. Accessed 20 Oct 2020.

  27. Baileys K, McMullen L, Lubejko B, et al. Nurse Navigator Core Competencies: An Update to Reflect the Evolution of the Role. Clin J Oncol Nurs. 2018;22(3):272–81.

    Article  PubMed  Google Scholar 

  28. Mitchell K-AR, Brassil KJ, Rodriguez S, et al. Operationalizing patient-centered cancer care: A systematic review and synthesis of the qualitative literature on cancer patients’ needs, values, and preferences. Psycho Oncology. 2020;29:1723–33.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Brogan AP, DeMuro C, Barrett AM, D’Alessio D, Bal V, Hogue SL. Payer Perspectives on Patient-Reported Outcomes in Health Care Decision Making: Oncology Examples. J Manag Care Spec Pharm. 2017;23(2):125–34.

    PubMed  Google Scholar 

  30. Gunn C, Battaglia TA, Parker VA, et al. What Makes Patient Navigation Most Effective: Defining Useful Tasks and Networks. J Health Care Poor Underserved. 2017;28(2):663–76.

    Article  PubMed  Google Scholar 

  31. Lavallee DC, Chenok KE, Love RM, et al. Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care. Health Aff (Millwood). 2016;35(4):575–82.

    Article  PubMed  Google Scholar 

  32. Rodday AM, Parsons SK, Snyder F, et al. Impact of patient navigation in eliminating economic disparities in cancer care. Cancer. 2015;121(22):4025–34.

    Article  PubMed  Google Scholar 

  33. Catalyst for Payment Reform. Blog: Who is Catalyzing Payment Reform in Oncology? . In.

  34. Centers for Medicare and Medicaid Services. Evaluation of the Oncology Care Model: Performance Periods 1–3 2020. . https://innovation.cms.gov/data-and-reports/2020/ocm-evaluation-annual-report-2. Accessed 20 Oct 2020.

  35. Jones KR, Vojir CP, Hutt E, Fink R. Determining mild, moderate, and severe pain equivalency across pain-intensity tools in nursing home residents. J Rehabil Res Dev. 2007;44(2):305–14.

    Article  PubMed  Google Scholar 

  36. Mathews SC, McShea MJ, Hanley CL, Ravitz A, Labrique AB, Cohen AB. Digital health: a path to validation. NPJ Digit Med. 2019;2:38.

    Article  PubMed  PubMed Central  Google Scholar 

  37. HIMSS news release ‘HIMSS Continues Improving Health App Effectiveness and Safety’. https://www.himss.org/news/himss-continues-improving-health-app-effectiveness-and-safety. Published 2020. Accessed 12 Nov 2020.

  38. Stoyanov SR, Hides L, Kavanagh DJ, Wilson H. Development and Validation of the User Version of the Mobile Application Rating Scale (uMARS). JMIR Mhealth Uhealth. 2016;4(2):e72.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Charbonneau DH, Hightower S, Katz A, et al. Smartphone apps for cancer: A content analysis of the digital health marketplace. Digit Health. 2020;6:2055207620905413.

    PubMed  PubMed Central  Google Scholar 

  40. The System Usability Scale (SUS). Reprinted from usability.gov. https://www.usability.gov/how-to-and-tools/methods/system-usability-scale.html. Published 2020. Accessed 29 Oct 2020.

  41. Gustavell T, Sundberg K, Langius-Eklöf A. Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study. JMIR Mhealth Uhealth. 2020;8(6):e17855.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Heynsbergh N, Heckel L, Botti M, Livingston PM. A Smartphone App to Support Carers of People Living With Cancer: A Feasibility and Usability Study. JMIR cancer. 2019;5(1):e11779. https://doi.org/10.2196/11779.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Marincola Smith P, Baechle J, Tan MC, et al. Impact of Insurance Status on Survival in Gastroenteropancreatic Neuroendocrine Tumors. Ann Surg Oncol. 2020;27(9):3147–53.

    Article  PubMed  Google Scholar 

  44. Poulson MR, Papageorge MV, LaRaja AS, Kenzik KM, Sachs TE. Socioeconomic Mediation of Racial Segregation in Pancreatic Cancer Treatment and Outcome Disparities. Ann Surg. 2022.

Download references

Acknowledgements

None

Funding

This project was conducted under the auspices of the Georgetown University Oncology II Institutional Review Board. The project was supported by a contract (ID: 75N91020C00043) to GMG ArcData LLC by the Department of Health and Human Services and the National Cancer Institute. Funding was utilized for app development, development of study design, and data collection only. (ClinicalTrials.gov Identifier: NCT04892927; 5/19/2021).

Author information

Authors and Affiliations

  1. MedStar Georgetown Transplant Institute, Lombardi Comprehensive Cancer Center, MedStar Georgetown University Hospital, 3800 Reservoir Rd. NW, PHC Bldg, 2nd Floor, Washington, DC, 20007, USA

    Sami Shoucair, Gregory Downing, Jacqueline O’Rourke, Liza Greenberg, Paula Kim, Thomas Fishbein, Keith Unger & Emily Winslow

  2. GMG ArcData LLC®, Washington, DC, USA

    Gregory Downing, Mike Yea & Gunjan Vatas

Authors
  1. Sami Shoucair
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Gregory Downing
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jacqueline O’Rourke
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Liza Greenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Mike Yea
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Gunjan Vatas
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Paula Kim
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Thomas Fishbein
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Keith Unger
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Emily Winslow
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

S.S. performed data analysis, manuscript preparation, and graphic results presentation. G.D. participated in study design, design of data services platform, participated in writing manuscript. J.O. assisted patient care and study enrollment, conducted post-hoc analysis. L.G. writing manuscript. M.Y. lead engineer, architect and systems analyst. G.V. lead technical engineer and solutions architect. P.K. patient consultation, consenting, and product design. T.F. clinic operations lead and communications. K.U. clinical research oversight, communications and editing. E.W. led the design of the study, supported patient enrollment and clinical navigation role, conducted analysis of data, prepared and reviewed written document.

Authors’ information

None.

Corresponding author

Correspondence to Emily Winslow.

Ethics declarations

Ethics approval and consent to participate

This study was conducted in accordance with the principles of the Declaration of Helsinki and was approved by the Institutional Review Board (IRB) of Georgetown University. All methods described in this study were performed in accordance with relevant guidelines and regulations, including Good Clinical Practice guidelines and applicable laws and regulations. Informed consent was obtained from all subjects and/or their legal guardian(s). The confidentiality and anonymity of the study participants were protected, and no identifiable information was included in the study. Further information and documentation to support this should be made available to the Editor on request.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1: Table S1.

Commission on Cancer Requirements Relating to Patient Navigation. Table S2. Evidence on Patient Needs from Patient Navigation (PN). Table S3. Value of Enhanced Navigation to Stakeholders. Table S4. Decision-making for the Final PatientNav app design based on Evidence-based Recommendations Identified in Needs Assessment Process. Table S5. In-App Survey Questionnaire assigned to patient navigators as a task through the app. Table S6. Clinical Characteristics, Services and Peri-operative Management in Overall Cohort (N=22). Table S7. Usage rate in patient access to education material and assigned tasks on PatientNav. Table S8. Summary of Online Virtual Interview Responses Assessing Care Team Navigators Impressions and Feedback on PatientNav usability. Table S9. Univariable Comparison of High (N=9) and Low (N=12) Function Usage in PatientNav App with Patient App Users Grouped Based on Overall Number of Tasks Used. Figure S1. (A) Distribution of patient app users into low and high function users based on number of PatientNav tasks used. (B) Comparison of difference in median age [52.2 vs. 61.5 years; P = 0.058].

Additional file 2.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Shoucair, S., Downing, G., O’Rourke, J. et al. Closing the patient-provider gap along the surgical journey one click at a time: results of a phase I pilot trial of a patient navigation tool. BMC Digit Health 1, 52 (2023). https://doi.org/10.1186/s44247-023-00049-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1186/s44247-023-00049-6

Keywords

BMC Digital Health

ISSN: 2731-684X

Contact us