
People living with human immunodeficiency virus could particularly benefit from mobile health (mHealth). The objective of the study was to contribute to the design and development of a new standard of care for people living with human immunodeficiency virus and the mHealth app needed to support it by 1) exploring the view of people living with human immunodeficiency virus and healthcare professionals on the possibilities of mHealth tools on HIV care, and 2) implementing their feedback into the new app and into the new journey of people living with human immunodeficiency virus.
MethodThe study was conducted in two different phases: phase one was to apprise patients’ and healthcare professionals’ perspectives on mHealth using the qualitative methodology of the focus groups, whereas phase two aimed to implement their feedback into the application.
ResultsA total of five people living with human immunodeficiency virus and nine healthcare professionals (three clinical pharmacists, three nurses, two physicians, and one pharmacy technician) participated in the focus groups. The patients identified the following main aspects to be improved in the current patients’ journey: insufficient information (n = 5), lack of general population disease awareness (n = 5), and medication dispensation model (n = 3). Moreover, healthcare professionals identified the next health outcomes to be enhanced with mHealth tools: patients’ quality of life (n = 7), control of the disease (n = 5) and comorbidities (n = 3), and adherence to medication (n = 5). According to these needs, the new healthcare model was designed. The mHealth was provided with different features, such as information about the disease, health promotion and prevention, the possibility of two-way patient-healthcare professionals communication, or synchronization with other devices. The new human immunodeficiency virus care journey and the app are currently being tested in a group of people living with human immunodeficiency virus in real-world conditions in our hospital.
ConclusionsImproving patients’ quality of life, therapeutic adherence, or disease control are key objectives for optimizing people living with human immunodeficiency virus care. Our digital health tool and the new healthcare model have been implemented based on end-users’ feedback to achieve better patients-healthcare professionals communication and patient engagement with their care.
Las personas que viven con el virus de la inmunodeficiencia humana podrían beneficiarse de nuevas estrategias de salud móvil (mSa-lud). El objetivo del estudio fue contribuir al diseño y desarrollo de un nuevo modelo asistencial en la población con virus de la inmunodeficiencia humana y de la aplicación móvil necesaria para apoyarlo mediante: 1) la exploración de la visión de personas que viven con el virus de la inmunodeficiencia humana y profesionales sanitarios sobre las herramientas digitales en la atención a este colectivo, y 2) la implementación de sus perspectivas en la nueva aplicación y en la nueva ruta asistencial.
MétodoEl estudio se realizó en dos fases: la primera tenía como objetivo conocer las perspectivas de los participantes sobre la salud móvil mediante la metodología cualitativa de los grupos focales, y la segunda implementar estas valoraciones en la aplicación.
ResultadosParticiparon cinco pacientes y nueve profesionales sanitarios (tres farmacéuticos clínicos, tres enfermeras, dos médicas y una técnico de farmacia). Los pacientes consideraron que debían mejorarse los siguientes aspectos en su ruta asistencial: información insuficiente (n = 5), falta de conocimiento de la enfermedad (n = S) y modelo de dispensación de la medicación (n = 3). Los profesionales identificaron que debían mejorarse: la calidad de vida de los pacientes (n = 7), el control de su enfermedad (n = S) y de sus comorbilidades (n = 3), y la adherencia terapéutica (n = S). De acuerdo con estas necesidades, se diseñó el nuevo modelo asistencial. Las siguientes características se incorporaron a la mHealth: información sobre la enfermedad, promoción y prevención de la salud, posibilidad de comunicación bidireccional profesional-paciente o sincronización con otros dispositivos. La nueva ruta asistencial y la aplicación están siendo estudiadas en un grupo de personas que viven con el virus de la inmunodeficiencia humana en condiciones de vida real y en seguimiento en nuestro hospital.
ConclusionesLa mejora de la calidad de vida, la adherencia terapéutica y el control de la enfermedad son factores clave para la optimización de la atención de las personas que viven con el virus de la inmunodeficiencia humana. Nuestra herramienta de salud digital y el modelo asistencial han sido diseñados en base a la opinión de pacientes para mejorar la comunicación profesional-paciente sanitario y conseguir un mayor compromiso de los pacientes con su cuidado.
The use of digital health (eHealth) has a promising potential in delivering healthcare services to patients living with chronic conditions, especially with the opportunity to apply mobile phones technology (mHealth)1. The irruption of the novel coronavirus (COVID-19) outbreak in 2020 has increased the adoption of eHealth, mHealth, or other Telemedicine technologies as a practical solution to continue with chronic patients’ healthcare while restricting presential appointments to healthcare facilities. Besides, previous experiences with eHealth and mHealth in chronic patients resulted in a better quality of care, enhanced clinical outcomes, and patient experience, in addition to a reduction in medical costs2–6.
People living with human immunodeficiency virus (PLWH) could significantly benefit from mHealth tools since they necessitate close clinical monitoring and effective interdisciplinary care: they require lifelong antiretroviral therapy (ART), regular follow-up visits, and laboratory tests, and often accumulate multiple clinical comorbidities7. In addition, some of them have a high prevalence of comorbidities and polypharmacy8. Thus, implementing a mHealth tool to assist the PLWH management might help improve disease monitoring and treatment adherence, optimizing the current health care delivery.
The implementation of mHealth tools targeting complex populations such as PLWH is challenging. The mHeart application (app), recently implemented in our heart transplant outpatient clinic, is already a consolidated eHealth tool designed to help enhance chronic-stage heart transplant recipients’ clinical care. The mHeart implementation has increased medication adherence in heart transplant recipients and has enhanced patients’ experience and satisfaction with care9–11.
Based on this previous experience, we are currently developing a new standard of care for PLWH and the mHealth app needed to support it, the EMMASalud (eHealth Medical Multiplatform Aid) MyPlan version. EMMASalud MyPlan is grounded on the theoretical framework of mHeart; therefore, it has been designed to promote targeted disease management.
The study was set out as part of a global project to implement a strategy for improving the current PLWH’ journey using an interdisciplinary technology-based behavioral app. The study described in this article has two specific objectives: 1) to explore the view of patients and healthcare professionals (HCPs) on the possibilities of mHealth tools on HIV care, 2) and to implement their feedback into the new EMMASalud MyPlan and into the new standard of care for PLWH.
MethodsThe present study is part of an implementation strategy of a clinical practice improvement model. It was conducted by the pharmacy service together with the infectious disease unit at a tertiary university hospital between 2020 and 2022. The coordinator team comprised two clinical pharmacists with extensive experience in implementing digital health strategies and in the guidance of focus groups. The study was approved by the referent Ethics Committee (IIBSP-ARV-2020-78).
The study had two different phases: phase one was to apprise PLWH’ and HCPs’ perspectives on mHealth using the qualitative methodology of the focus groups, whereas phase two aimed to implement their feedback into the app and the new standard of care for PLWH.
The project's ideation was carried out between 2019 and 2021 (before starting phase 1: focus groups). This preliminary step of the project aimed to define the study objectives, design, and phases, set up the research team, conduct the administrative procedures (approval of the ethics committee) and search for funding. A summary of the phases of the study is described in figure 1.
Phase 1 consisted of the qualitative methodology of the focus groups and lasted from September to October 2021. The focus groups were held at hospital facilities, lasted between one and two hours, and were guided by the coordinator team. The COREQ (Consolidated criteria for reporting qualitative Research) guidelines were followed to report the content of focus groups12 (Supplementary Material, Table 1).
Summary of the main findings of the participants focus groups
Patient focus group (N = 5) | ||
Aspects for improvement in the current HIV-infected patients' standard of care (most frequent answers) | ||
Insufficient information about their disease, prognosis, and therapeutic management, n = 5 (100%) | ||
Lack of awareness of the disease in the general population (need destigmatization of the disease), n = 5 (100%) | ||
Be provided with medication for a longer period, n = 3 (60%) | ||
No need to pick up medication at the hospital, n = 2 (40%) | ||
Having more HIV references and other people with HIV to talk to, n = 2 (40%) | ||
Strategies to achieve these improvements (most frequent answers) | ||
More information during and after diagnosis about their disease, prognosis, therapeutic management, and availability of contrasted sources of information | ||
In particular, more specific information on: | ||
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Greater discretion in the healthcare environment (avoidance of the term infectious and greater anonymity) | ||
Domiciliary and longer-term medication dispensation |
Features that mHealth must have to obtain these results | Implemented | Postponed to subsequent improvement phases |
---|---|---|
Ease of access and use | ✓ | |
Information about the disease | ✓ | |
Direct two-way patient-professional communication (messaging and video-call) | ✓ | |
Visits and medication management (medical appointments, prescriptions, etc.) | ✓ | |
Ability to generate medical history report | ✓ | |
Synchronisation with other institutional health apps | ✓ | |
Synchronisation with other devices (i.e., apple watches) | ✓ | |
Chat/forum other patients | Not programmed | |
Healthcare professionals (N = 9) | ||
Health outcomes benefit obtained from the use of mHealth tools (most frequent answers) | ||
Improved patients' quality of life, n = 7 (77.8%) | ||
Improved disease control, n = 5 (55.5%) | ||
Improved patients' adherence to therapy, n = 5 (55.5%) | ||
Improved comorbidities' control, n = 3 (33.3%) | ||
Increased patient awareness of their pathology (expert patient), n = 3 (33.3%) | ||
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Role that PLWH should adopt to achieve these objectives (most frequent answers) | ||
Increased patients' engagement, n = 6 (66.7%) | ||
Increased patients' confidence in the professionals who attend them, n = 4 (44.4%) | ||
Increased clinical follow-up, n = 3 (33.3%) | ||
Improved communication between patients and HCPs, n = 2 (22.2%) | ||
Healthier lifestyle habits, n = 2 (22.2%) | ||
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Features that mHealth must have to obtain these results | Implemented | Postponed to subsequent improvement |
---|---|---|
Ease of access and use | ✓ | |
Information about the disease | ✓ | |
Direct two-way patient-professional communication (messaging and video-call) | ✓ | |
Visits and medication management (medical appointments, prescriptions, etc.) | ✓ | |
Reporting of patient symptoms and adverse events | ✓ | |
Communication with other professionals and the possibility of referral | ✓ | |
Emotional support to the patient | ✓ |
AIDS: acquired immunodeficiency syndrome; HIV: human immunodeficiency virus.
Participants in the focus groups, PLWH and HCPs, were recruited by direct invitations. The patients’ sample comprised subjects under ART treatment followed by the infectious disease and the pharmacy team, whereas HCPs’ sample consisted of professionals from different specialties. All participants provided written informed consent.
During focus groups, PLWH were asked to identify aspects to improve their journey, whereas HCPs were required to determine positive health outcomes obtained using mHealth tools. Both groups also had to establish what characteristics and tools EMMASalud MyPlan should have in our healthcare setting.
Focus groups were structured in the following stages: metaplan, prioritization (only for HCPs), open discussion, and discussion. Before the discussion, a demonstration of EMMASalud MyPlan tool was made (See the Supplementary Material, Figure 1, for more information about focus groups methodology).
Phase 2: Implementation of people living with human immunodeficiency virus and healthcare professionals’ feedback into the new mHealth appPhase 2 lasted from November to December 2021. It was intended to assess PLWH and HCPs’ feedback, identify unmet needs in the PLWH pathway, and the app functionalities that would meet those needs for its implementation into the new app and standard of care. Together with the technical team, the coordinators identified and prioritized the most important features to be implemented in the app and tested the resulting system prototypes. Additionally, the Hospital Information System Department and the technical team worked on the interoperability between the app and the hospital clinical record.
Finally, a multidisciplinary team guided by the coordinating team coordinated the redesign of the current PLWH’ journey and designed a pilot study to evaluate the new care model in clinical practice.
ResultsPhase 1: Focus groupsPatients’ focus groupsOf 14 patients contacted, 5 male patients participated in the focus group with a mean age of 39 (range 27-54 years). The patients’ focus group results are summarized in table 1.
PLWH considered that current PLWH’ journey has the following problems: insufficient information (n = 5), lack of general population disease awareness (n = 5), and treatment dispensation (dispensation for a short period [n = 3] and need to pick up medication at the hospital [n = 2]). Accordingly, patients believed they received insufficient information about their disease, prognosis, and therapeutic management. They also believed in the need to improve society information about HIV to mitigate stigma and discrimination. In addition, most PLWH expressed their preference for home delivery or dispensation at community pharmacies instead of hospital pharmacies and wished to be provided with medication for a longer period.
Patients identified the following features in a mHealth to overcome their unmet needs: information about their disease and medication; direct communication with HCPs (via messages or video calls); access to medical appointments, prescriptions, laboratory tests, or medical history reports; synchronization with other health apps or other electronic devices; and chats or forums with other patients.
Healthcare professionals’ focus groupsIn total, nine HCPs of different specialties participated in the focus group: clinical pharmacists (n = 3), nurses (n = 3), physicians (n = 2), and pharmacy technicians (n = 1). The HCPs’ focus group results are summarized in table 1.
Participants identified different health outcomes to be enhanced from the use of mHealth tools: patients’ quality of life (n = 7), control of the disease (n = 5) and comorbidities (n = 3), and adherence to medication (n = 5). According to HCPs, achieving these goals requires greater patients’ willingness to have a closest clinical follow-up and a greater engagement and trust in the professionals.
For HCPs, mHealth should provide: educational information; direct communication with patients (via messages or video calls); visits and medication traceability management; monitor patients’ self-report symptoms, adverse events and therapeutic adherence; consultations with other specialists, and referrals.
Phase 2. Implementation of patients’ and healthcare professionals’ feedback into the new mHealth appFunctionalities of the new app adapted to people living with human immunodeficiency virusBased on the results of the focus groups, mHealth features and functionalities were identified and prioritized to be applied in the EMMASalud MyPlan prototype. Concretely, disease information, health promotion and prevention, two-way patient-HCPs communication and synchronization with other devices were implemented (Figure 2 shows screenshots of the EMMASalud MyPlan and its functionalities). Other functionalities will be applied in future phases (Table 1).
Application EMMASalud MyPlan screenshots. 1) Home screen. 2) System menu (agenda, self-controls, treatment consultation and management, messages, health information, personal data, healthcare data, clinical data, help, about the app and terms of use. 3) An example of self-control (i.e., cardiac frequency measure): view of the data provided by the patient and the pattern prescribed at the agenda.
As a result, EMMASalud MyPlan was designed as a patient app and a professional support website for the follow-up of PLWH. PLWH module permits them to register health controls (such as blood pressure, weight, glycemia, or exercise), symptoms (fever, diarrhea, constipation, insomnia, vomiting, nausea, asthenia, headache, pain, skin problems, and others), medication adherence and medical appointments or other relevant citations for the user. The app also permits them to receive reminders of medication and appointments and establish synchronous and asynchronous communication with their health providers.
On the other hand, the providers’ module permits to consult patients’ symptoms and adverse events, treatment adherence, and other health controls. It also allows synchronous and asynchronous communication with patients.
Table 2 shows the details about patients’ and providers’ modules functionalities and their clinical applications. More details are provided in a video link to the app for patients (https://www.youtube.com/watch?v=q_RU03Zrxoo) and the web for HCPs (https://www.youtube.com/watch?v=hUpZ6VoKGco). The app can be downloaded free from the online Google13 and Apple14 stores. The general layout is represented in the Supplementary Material (Figure 2). The behavioral framework of the EMMASalud MyPlan is based on the mHeart model and has been published previously9–11.
EMMASalud patient and professional profile modules, components, and clinical use
Patient Module | Components and clinical use |
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Treatment |
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Patient-Centered Module | Consulting and recording data (manually or using wearables or data collected by other apps available on the smartphone). Reminders can be scheduled in Agenda:
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Agenda | The content of diverse modules is uploaded. A Push text alert can be activated on the patient's mobile phone for the following aspects:
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Communication Aids |
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Health Advice | Healthy lifestyle and health promotion information (e.g., texts, photographs, multimedia files, links to videos) |
Personal and Clinical Data | Sociodemographic data, documented allergies, and provider profiles (including affiliation and picture) |
Help |
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About | Information about the developers, the aim of the tool, and the team in charge of it and the sponsors |
Terms of Use and Privacy Policy | All the legal requirements already accepted should always be available for consultation |
Provider Module | Component and clinical use |
Patient View | List of active patient filters to organize the list and perform a rapid search |
Patient Registration |
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Treatment Prescription |
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Patient-Centered Data Consultation |
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Communication Aids |
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Reports | All PROMs and PREMs registered by the patients can be downloaded, filtered by dates, by any team member in an Excel format |
Incident Report | A external incident manager that allows the HCPs to trace their reported incidents or their suggestions to the technical team |
EQ-5D-3L: EuroQol-5 Dimension; HADS: Hospilal Anxiety and Depression Scale; HCPs: healthcare professionals; ISI: Insomnia Severity Index; PREMs: patient reportec experience measures; PROMs: patient reported outcomes measures; QR. quick response; SMAQ: simplified medication adherence questionnaire.
EMMASalud MyPlan has been designed for phone, computer, or tablet users. In addition, interoperability between the app and the hospital information system (hospital clinical records) has been solved. Consequently, it is possible a two-way data exchange: firstly, the app can incorporate sociodemographic data from the hospital patient's clinical records. Secondly, a report containing patients’ information registered in the app is uploaded weekly to the hospital information system.
The EMMASalud MyPlan tool is currently being tested in a pilot study for its future incorporation into the PLWH’ journey. The medical team selects patients to participate in this pilot study. Patients who accept to participate are then referred to the pharmacy department. Patients are randomly assigned to routine or mHealth follow-up through a pharmaceutical care visit. Patients in the intervention group are trained on the use of EMMASalud MyPlan. During the interview, pharmacists collect patients’ sociodemographic and lifestyle data, treatment adherence, and a complete medication profile. Patients can use asynchronous communication with their clinical team. Patients are invited to answer some questionnaires periodically scheduled in the app and related to the medication adherence (SMAQ, Hayness-Sackett), quality of life (EuroQoL-5D [EQ-5D]), anxiety and depression (Hospital Anxiety and Depression Scale [HADS]) or insomnia (Insomnia Severity Index [ISI]).
The multidisciplinary team (pharmacists, pharmacy technicians, doctors, and nurses) monitors patients’ health status through the app. If any serious adverse event is detected, a coordinated response is given. Patients are instructed that this app is not for urgent issues or consultations.
DiscussionThe use of mHealth systems —and, more specifically, mobile apps— to support chronic patients’ management improves quality of care, health outcomes and patient experience and also reduces medical costs in some settings2–6. Our study has contributed to develop an interdisciplinary technology-based behavioral app for PLWH patients.
In general, patients and HCPs shared common viewpoints on the possibilities of mHealth tools on HIV care. For example, both agreed that a mHealth tool could promote patients’ education, improve patients-HCPs communication, or integrate medical appointments and drug prescription and dispensation. In line with our results, in a previous focus group conducted in the United States15, young PLWH thought that a mHealth app might ease access and communication to HCPs and provide them with updated health education. In addition, it could help them schedule medical appointments or track personal data. Similarly, a group of physicians considered that mobile medical apps would be useful for informing and educating their patients and assisting their clinical decision-making or patient monitoring16.
Patients and HCPs in the study agreed on important aspects. However, they focused on diferent aspects of mHealth tools for PLWH. HCPs placed special focus on the use of mHealth technology to improve health outcomes, including patient quality of life, disease control, and patient adherence. Conversely, patients were centered on the fact that mHealth technology may help them be treated more discretely and change the dispensation medication model out of the hospital environment. Previous experiences demonstrated that digital health interventions might allow for greater PLWH anonymity and more flexibility in scheduling appointments17. They might also improve the efficiency of pharmacy follow-up visits or facilitate medication home delivery18,19.
Results of the focus groups enabled us to gain an in-depth understanding of the app end-users’ needs and incorporate them into the app as functionalities. Among these functionalities is the information about the disease, health promotion, and prevention, the possibility of direct patient-HCPs communication, or synchronization with other devices.
A key aspect of the development of any healthcare technology is its validation under real-life conditions and its implementation into the patients’ care pathway. Accordingly, this new tool is currently being implemented in our institution. The app is being tested in a group of PLWH in real-world conditions and compared with routine care. With the implementation in clinical practice, we expected an improvement in the PLWH’ journey in terms of patients’ and HCPs’ communication, medication adherence, patient empowerment, and healthy lifestyles. This has been corroborated in other technology-based interventions and settings20–23. Adherence to ART is crucial in HIV management to avoid drug resistance, disease progression, and complications24. In line with this, different interventions show that digital health help PLWH comply with ART25–27. Additionally, our experience with digital health intervention (mHeart) with chronic-stage heart transplant recipients resulted in higher adherence rates9–11.
Another challenge is to improve patients’ monitoring through mHealth. PLWH require lifelong and close follow-up as they might accumulate age-related comorbidities and polypharmacy7,8. In that respect, we believe that the use of mHealth might facilitate close and long-term monitoring of clinical parameters (i.e., blood pressure, heart rate, weight, glycemia, etc.), symptoms, and adverse effects. Clinicians may take clinical actions in response to these patients’ reports. Furthermore, we expect that our intervention might facilitate the monitoring of Patient-Reported Outcomes (PROs) and Patient-Reported Experiences (PREs) such as patients’ quality of life and satisfaction with their care, which might help to improve patients’ experience and ultimately strengthen their engagement and retention in their care as previously shown28,29.
Our study has some limitations. First, the PLWH's- sample was small. However, due to the qualitative nature of the study, the small sample did not limit the obtention of rich and detailed information about patient's view. Secondly, all patients were men. Nevertheless, most PLWH treated in Spain are men, what makes this sample a good representation of the end-users of the mHealth in our center30.
In conclusion, improving patients’ quality of life, therapeutic adherence, or disease control are key objectives for the optimization of PLWH’ journey. We are currently implementing our technology-based behavioral app EMMASalud MyPlan into our clinical protocols to establish a new PLWH’ journey. In addition, the app is being tested in real-world conditions. With the fully implementation of the app and the new healthcare model we expected to overcome these important challenges in HIV management through better patients-HCPs communication, patients’ monitoring and satisfaction, and engagement with their care.
FundingThis study was supported by Gilead. This contribution aimed to reinforce the study resources and implementation of the new patient journey and the study procedures.
The current sponsor Amgen has supported the Hospital to fund the technical development of the app EMMASalud MyPlan (EMMA, eHealth Medical Multiplatform Aid).
The funders mentioned above and the firm in charge of the technological development of the software (Trilema Salud Group S.L.) played no role in the study design, data collection, analysis, decision to publish, or preparation of the manuscript.
AcknowledgmentsThis work would not have been possible without the patients’ contributions and willingness to achieve a patient-centered design. Furthermore, we would like to express our gratitude to the Pharmacy Service and the rest of the clinical team involved in the focal groups and particularly to Sílvia Cermeño Reyes, Jessica Muñoz, Gemma Ballarín Laliena, Helena Ruppmann, Pilar Lozano and Fiorella Pérez, Jessica Muñoz Rodríguez.
Conflict of interestsThe authors declare no conflicts of interest. The technological development of the EMMASalud MyPlan application was carried out by a private Spanish firm specializing in health care system apps (Trilema Salud Group S.L.). Most of the authors of this study participated as consultants of the application design. Neither the funding entities mentioned above nor the technical developers played any role in study design, data collection and analysis, publication decision, or manuscript preparation.
Contribution to the scientific literature
Our study has contributed to implementing a new digital health model to improve people living with human immunodeficiency virus’ journey.
Our digital standard of care might improve people living with human immunodeficiency virus’ quality of life, therapeutic adherence, and disease control.