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Due to the complexities of advanced illnesses and their treatments, it can be difficult for patients in palliative care to maintain their quality of life. Telemedicine interventions in chronic disease management engage patients in their care, provide continuous follow-up by their health care providers, identify symptoms earlier, and allow a quick response to illness-related decline.
We aimed to detail and reflect on the design of an app and evaluate its feasibility to monitor the clinical situation of patients with advanced illnesses.
This study used a mixed methods design using qualitative methods to inform app development and design and quantitative methods for data collection and analysis of patient evaluations. Palliative care units in 2 Spanish university hospitals (Nuestra Señora de la Candelaria in Santa Cruz de Tenerife and University Hospital Complex of Ferrol in A Coruña) carried out a literature review, designed the study protocol, and obtained approval from the Ethics Committee from June to December 2020. In addition, focus group meetings were held, and the design and technical development of the app were elaborated on and subsequently presented in the participating palliative care units. From January to March 2021, the app was made public on the App Store and Play Store, and a pilot study with patients was carried out in April to September 2021.
Six focus group meetings were held that included doctors, nurses, app developers, technology consultants, and sponsors. In addition, the technology consultants presented their results 3 times in the participating palliative care units to obtain feedback. After the app’s final design, it was possible to publish it on the usual servers and begin its evaluation in patients (n=60, median age 72 years). Sixty percent (n=36) of the participants were women and 40% (n=24) were men. The most prevalent advanced pathology was cancer (n=46, 76%), followed by other diseases (n=7, 12%) and amyotrophic lateral sclerosis (n=5, 8%). Seventy percent (n=42) of the patients were already in follow-up prior to the start of the study, while 30% (n=18) were included at the start of their follow-up. The information in the app was collected and entered by relatives or caregivers in 60% (n=36) of the cases. The median follow-up was 52 (IQR 14-104) days. In all, 69% (n=41) had a follow-up >30 days (10 were deceased and 9 were missing data). The use of the different sections of the app ranged from 37% (n=22) for the glycemic record to 90% (n=54) for the constipation scale). Patients and caregivers were delighted with its ease of use and usefulness.
Incorporating an intelligent remote patient monitoring system in clinical practice for patients in palliative care can improve access to health services and provide more information to professionals.
Palliative care supports patients with life-threatening illnesses with a focus on disease management and overall quality of life improvement [
Specific to palliative care, Lundereng et al [
The following definition of telemedicine is a starting point: “the provision of medical care at a distance through a variety of telecommunications tools.” This suggests that there are various possible solutions to implement in palliative care. This variety offers the possibility of selecting the most appropriate modality: synchronous or asynchronous; media such as voice, videoconference, and chat; and whether the operating system environment should be computers, mobile phones, or tablets. The main conditions for the success of an initiative related to telemedicine will be whether the project’s design can be adequately implemented with the characteristics and actual needs of patients and professionals. Thus, acceptance will be related to the project’s ability to facilitate clinical management, increase accessibility, improve health outcomes without increasing the burden of care, and provide continuous, high-quality care and follow-up in the location desired by patients and families (usually their homes). Specific to an intervention targeting patients with advanced illnesses, the development team would ideally comprise health personnel members who attend to these patients’ clinical needs alongside programmers with training and expertise in designing and adapting models based on telemedicine. It would also be of great value to obtain feedback on user experience from the patients and their families or caregivers for the optimal final design. However, it is important to note that heterogeneity in the team’s professional background can result in slower project development, as differing expectations and comprehension of clinical needs and strengths or limitations of technologies intersect [
Here we share the personalization of the HumanITcare platform to the palliative care setting. Emphasis is placed on the developers’ perspectives and workflows for feasibility testing; these results have been reported elsewhere by Castillo-Padrós et al [
The difficulties in using smart technology by the elderly population have not been the subject of many studies. However, Busch et al [
Harris et al [
The design of this study allowed for data collection by the patients themselves or by their relatives or caregivers to ensure that participating in the project was not an inconvenience. Although it was not evaluated in this study due to its design characteristics, it could be interesting to further assess the difficulties that older or dependent patients have with smart technology in future studies.
This study is based on the HumanITcare platform. HumanITcare is an intelligent remote patient monitoring system (
Schematic diagram of the platform. API: application programming interface.
Written informed consent was obtained from each participant after a complete study description. The patients’ data were coded in dissociated databases and could only be accessed by the health care team. The study was approved by the Human Research Ethics Committee of Santa Cruz de Tenerife (2020-217-1) under the Ethical Principles for Medical Research Involving Human Subjects adopted in the Declaration of Helsinki by the World Medical Association (WMA) at the 64th WMA General Assembly in Fortaleza, Brazil, October 2013 and Spanish data protection regulations (Ley Orgánica 3/2018 de Protección de Datos Digitales). Neither the researchers nor the study subjects received financial compensation for their participation.
Each participant in the study was assigned an ID consisting of 8 random characters (eg, d4w192bg), and participant data could only be reviewed using this ID, which ensured data anonymization.
Participant data were also encrypted on the access platform for the researchers, technical administrators, and servers. The platform server is in Ireland and complies with the General Data Protection Regulation of May 25, 2018, and the Data Protection Law (Ley Orgánica de Protección de Datos de Carácter Personal, España).
When the patient registered on the platform through the app, the following legal notice regarding data protection appeared on the screen to obtain consent from the patient for data processing:
“This tool does not provide medical advice. It is only intended for information purposes for healthcare professionals. Do not use it as a substitute for professional medical advice, diagnosis, or treatment. Your doctor will review your responses and contact you, if necessary. Confidentiality of your data is important to us. Therefore, we have complied with the established data protection regulations. For more information, please read the detailed legal terms and conditions.”
This remote monitoring platform has 3 primary components: an app, integrated devices, and a web portal.
The app is available for Android and iOS systems to achieve maximum compatibility. Users register with a secure ID and temporary password. Once registered, the app appears personalized according to the follow-up care plan to which they belong. Depending on the program, users can complete different tasks (eg, recording different measurements and filling in questionnaires from validated scales) to collect data related to their health and well-being. They can consult all this data collected in a personal area available in the app. Communication channels (chat and video calls) are also available to improve accessibility between patients and their health teams.
Wearables and medical devices, such as pulse oximeters, blood pressure monitors, activity trackers, and smart scales, can connect via Bluetooth to the patient’s app to measure vital signs and other medical indicators (eg, physical activity, heart rate, sleep, oxygen saturation, blood pressure, and weight), thus providing an automatic data collection tool. In addition, HumanITcare has different brands of devices integrated into the platform to be device-agnostic and offer the patient the possibility to connect their own devices.
Professionals can access a website to manage remote patient monitoring. They can define which (and how often) variables should be monitored depending on each illness and each patient, set alarms when the monitored variables exceed a specific range, choose the connected devices, and customize the questionnaires each participant must answer at a specific time. Once all these parameters have been configured, professionals can view the data through the platform, receive alerts by email when patients report any symptoms or abnormal vital signs from home, communicate with them through the available channels (chat and video calls), and record the medical data of the visits in the patient’s profile.
The methodology to adapt the platform to patients in palliative care, as described above, was carried out in January to March 2021 and divided into three stages.
A total of 6 focus groups were held with palliative care physicians from 2 different hospitals, including methodologists, system developers, and sponsors, with the collaboration of Grupo Ferrer International SA and FollowHealth SL holding multidisciplinary discussions on what should be the best solution for patients in palliative care (
Multidisciplinary focus group.
After reviewing the literature and other apps or similar initiatives already developed for other patient populations and considering the results of the discussion groups, a proposal was developed for the app’s content.
Once the app’s content was discussed and analyzed, an initial proposal was drawn up, considering ease of use by patients and relatives or caregivers as a central premise for optimal data collection and feedback on variables needed for effective tracking by the population of interest (
Based on the analysis carried out in the first phase, a new app version was created to improve the user experience and functionalities. We selected the following characteristics to determine the health status of patients with advanced illnesses remotely: a registry for clinical variables, a registry for questionnaires, alarms for registered clinical variables, a personal area to review the data of the registered clinical variables, and communication channels, including chat and video calls.
Final presentation to palliative care units.
We sought to adapt the HumanITcare platform specifically to patients in palliative care based on the previously identified requirements and, subsequently, carried out a pilot test among 60 patients from Hospital de la Candelaria (Canary Islands) and Hospital de Ferrol (Galicia). The study was approved by the drug research ethics committees of the hospitals participating in the study (
Most important was that the app be complete and precise, so that professionals could extract the necessary information quickly and easily without adding a burden to their professional duties.
Pilot study at 2 Spanish hospitals. CEIm: Drug Research Ethics Committee.
The content of the app for patients was structured into 4 main sections: clinical measures, questionnaires, a personal area, and chat.
The first section is clinical measures (
Remote vital sign recording screenshots.
The second section was questionnaires (
Questionnaire registration.
This digital solution also had a section prepared to display the data entered in the app as a diary, so patients and carers could review the values entered to improve their compliance and support their self-monitoring (
Data diary input by patients.
Patients and professionals can exchange messages about their needs, situation, or clinical process. By downloading the HumanITcare solution, symptoms, vital signs, and medication management can be remotely monitored. In addition, patients, family members, and caregivers could respond to the app’s questionnaires and measurements once a day as they saw fit (
Chat section screenshot.
The doctors or health care personnel responsible for the patients checked the values entered by the participants daily. They received an alarm if the reference values deviated from normal. In these cases, the patient was contacted as soon as possible by chat or phone (
Visualization of professionals’ screens from a workstation using the HumanITcare platform.
After receiving the protocol approval, pilot testing was conducted from April to September 2021 among 60 patients from Hospital de la Candelaria (Canary Islands) and Hospital de Ferrol (Galicia). The following data were collected: demographics, including age, recorded pathology, time of inclusion in the pilot study, and who was responsible for data collection; clinical measurements, including blood pressure, temperature, heart rate, oxygen saturation, and blood glucose; symptom intensity, including monitoring the presence and intensity of the most frequent symptoms (using the revised version of the ESAS); functional status, using an adaptation of the contents of the PPS scale; medication reminders, to assess whether the usual treatment was sufficient for the patient; stools (the presence of constipation was explicitly assessed using an adaptation of the Rome IV criteria); satisfaction questionnaires, including the Post-Study System Usability Questionnaire (PSSUQ); and the use of chat, which provided a new communication channel between professionals and patients or relatives in a secure information environment.
Preliminary results from the data collected have been previously published [
Characteristics of the patients (n=60) included in the HumanITcare platform study.
Characteristics | Participants, n (%) | |
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Women | 36 (60) |
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Men | 24 (40) |
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Cancer | 46 (76) |
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Respiratory pathologies | 7 (12) |
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Amyotrophic lateral sclerosis | 5 (8) |
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Heart conditions | 2 (3) |
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Renal impairment | 1 (1) |
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After follow-up was already started | 42 (70) |
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At the time follow-up was started | 18 (30) |
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Patients | 24 (40) |
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Relatives or carers | 36 (60) |
The application’s design is simple, although in all cases, it was ensured that the patient had a family member or caregiver who could help them complete what they could not.
Overall, very positive responses were received, mainly related to the perceived usefulness of the application. One problem mentioned by participants was the length of the PSSUQ and the repetition of items. There was thus a need for feedback, as patients and caregivers only selected items related to overall satisfaction, ease of use, and perceived usefulness. The study focused on acceptance and usability by patients, caregivers, and professionals. However, more research is needed to demonstrate that using the app helps achieve specific care goals, such as improved symptom control and reduced urgent visits.
In order to respond to the needs and deficiencies detected in the clinical care of patients with advanced illnesses, the HumanITcare platform was started with a singular style of shared development.
The HumanITcare solution, characterized by its customization, was adapted to the app based on a review of previous scientific initiatives and the clinical experience of professionals who care for patients with advanced illnesses [
The technical development for the personalization of the HumanITcare platform was possible due to preexisting familiarity with these applications among the professionals who oversaw it, the response to the needs of the health care workers, and thought about their needs and those of the patients. In addition, having a technical team that continuously monitored the proper functioning of the app and could quickly and effectively resolve doubts and problems raised by patients and professionals contributed significantly to the success of this project.
Most previous initiatives have focused solely on monitoring isolated data, but the HumanITcare platform is comprehensive and consistent. It collects all the data considered especially important for the follow-up of these patients in an intuitive and easy-to-use way for all audiences, thus better controlling each patient’s clinical evolution [
At a qualitative level, the experience and usability data of the patients were very positive. This innovative project aims to complement and help the structures and resources of existing palliative care units to improve effective home care programs that provide comprehensive and coordinated care closely tailored to each patient’s needs.
There are still several steps to take before implementing the systematic integration of this experience in the usual care of this type of patient. Murray et al [
Here we highlight the HumanITcare platform solution, as it brought together the clinical constants usually evaluated in face-to-face consultations and some of the most-used questionnaires by professionals working with patients with advanced illnesses. The clinical constants are essential for the future development of effective mHealth systems that support remote monitoring of symptoms through wearable devices combined with proactive care for patients at constant risk of rapid or unexpected deterioration of health status. Continuous assessment and critical review of symptoms by patient and physician are the cornerstones of effective outpatient palliative care. Numerous technology-related applications have proven their benefits in engaging patients in their care, promoting treatment adherence, focusing face-to-face assessments on the most critical issues, and improving overall health outcomes.
The results of this project support the conclusions of other studies that patients with advanced illnesses could be the ideal beneficiaries of an intervention focused on telemedicine, and that such intervention can be a helpful complement to their care, so that they can remain in their homes for as long as possible while receiving optimal care [
Even in a population with extreme frailty and high needs, such as patients with advanced illnesses, initiatives based on telemedicine can be successfully developed and enthusiastically accepted [
The care and design/technical support teams must be in contact from the beginning of the study to uncover the specific needs of the patients and professionals to be addressed by the app or platform. There must be continuous feedback that quickly incorporates the changes that are considered necessary to resolve the problems that arise. Changes to the overall functions of health care structures and professions are complex, so incorporating these new forms of health monitoring must not add burdens and must show clear benefits. For the incorporation of this app to be sustainable over time, the implemented solution must provide improvements in the health outcomes of patients and, in turn, facilitate the work of professionals. The patients with advanced-stage illnesses and their caregivers or relatives were delighted to participate in this initiative related to new technologies based specifically on mobile phones and handled this technology in a wholly normalized way, so it seems appropriate to continue exploring this line of research and clinical assistance with this population.
This study had limitations. First, although the app was designed to be as straightforward as possible and accessible to anyone, it was introduced as something to be used interchangeably by patients and caregivers. Thus, we could not assess if patients directly experienced problems entering data or with the general use of the app or if they needed a family member or caregiver to assist them in its use. Also, we did not explicitly evaluate, as it was not the aim of the study, whether people with physical or cognitive disabilities or deficits could use the app.
Second, given that the study focused on the acceptability and usability of the app by patients, caregivers, and professionals, the sample size did not provide sufficient power to analyze whether specific care objectives were achieved with the use of the app, such as better symptom control or reduced hospital visits. In line with this, a final limitation was that the pilot testing was only done in 2 hospital units with few patients. However, to recommend its use in other centers or settings (for example, home care units), it would be helpful to demonstrate its role in improving health outcomes. Therefore, future work should aim for a more extensive study with a more significant number of patients across multiple centers.
The HumanITcare digital solution is proposed as a clinical monitoring tool based on ICT and focused on patients with advanced illnesses. This digital solution optimizes and coordinates activities through intelligent planning, anticipation, and prevention of critical events through its alarm system management. In addition, it automates manual tasks and procedures, facilitates the mutual coordination of medical personnel and patients, carers, and families, and uses a personalized care plan derived from direct monitoring of each patient’s daily signs and symptoms.
Among patients who completed their follow-up study using their mobile phone, more than 80% highlighted the app’s use as an effective form of communication. This app demonstrates that the digital divide is narrowing and that technologies such as those provided by HumanITcare can add value to patient services. Nevertheless, there is some future work to do on this particular platform, including increasing the use of integrated medical devices via Bluetooth to improve usability instead of using manual registration, a function that HumanITcare already has; using voice and image recognition to monitor patients without medical devices at home, using artificial intelligence processes; increasing the use of the video call functionality available on the platform to improve communication between medical professionals and patients from home; and continuing to integrate HumanITcare through an application programming interface with electronic health records (so that the medical team can access all the information on the same management platform) using the Fast Healthcare Interoperability Resource interoperability standard developed by Health Level 7 to enable the electronic exchange of health care data between different systems in the health care industry.
Edmonton Symptom Assessment System
information and communication technologies
mobile health
Palliative Performance Status
Post-Study System Usability Questionnaire
World Medical Association
The authors thank all the health care professionals and patients who participated. We also thank Grupo Ferrer International SA for funding this work.
None declared.