Here, Professor Bertrand Lebouché introduces ‘warm’ mobile health technology to enable better self-management in HIV care
After 40 years of the HIV pandemic, no cure or vaccine exists; however, effective antiretroviral therapies (ART) have significantly improved the life expectancy of people living with HIV (PLWH). While responsible for more than 35 million deaths globally, HIV infection has changed from a fatal to a chronic disease1. When treatment is initiated early and maintained over the long term in developed countries, the same life expectancy as HIV-negative people can be expected, but far fewer years in good health2,3. This increased longevity requires more self-management from PLWH.
HIV self-management refers to the empowerment of PLWH to take control of and manage their overall health. For PLWH, self-management involves optimal adherence to lifelong ART and regular monitoring through laboratory tests and clinical visits. Remaining undetectable or keeping the HIV virus suppressed, is primary to limit the virus’ impact on the body and eliminate the risk of transmission to others.
But managing this chronic illness and changing related behaviours can be challenging and takes time for PLWH and their caregivers. In chronic care, most PLWH will meet their clinician twice a year for 30 minutes. The rest of the year, they must self-manage, sometimes with limited access to their clinicians and clinical data. Despite medical successes, HIV care remains complex, especially for an aging population and where many patients face multiple psychosocial disadvantages. MHealth can offer some solutions.
Mobile Health or mHealth involves using mobile devices, such as mobile phones, patient monitoring devices, or personal digital assistants, for medical or public health practice4,5. MHealth can minimise the physical and figurative distance between patients and the healthcare system, and further engage and retain them in their care. While several smartphone apps for HIV self-management and medication adherence are available in app stores, few are downloaded. MHealth tools with relevant functionalities for PLWH (such as treatment reminders) may be more acceptable6,7. Further exploration of the potential of a variety of mHealth technologies for HIV care is needed.
Opal and Marvin, examples from HIV care
At the McGill University Health Centre (MUHC) (Montreal, Canada) we are developing several mHealth solutions to help foster PLWH self-management. We are adapting Opal (Oncology Portal and Application), a patient portal, for HIV care. Patient portals give patients continuous access to their personal health information through a secure website. They can include diverse features to facilitate self-management, enable patients to remain connected with the healthcare team between visits and save patients’ time. Opal, first piloted in 2018 at the Cedars Cancer Centre of the MUHC, is the brainchild of a breast cancer patient and McGill University computer science professor, the late Laurie Hendren, and was codesigned with cancer patients8.
Opal includes a smartphone application that gives patients secure access to their appointment schedules and lab results; personalised educational materials; patient-reported outcome measures (PROMs) to complete; and waiting room management tools. Among the HIV patients and healthcare providers surveyed to inform Opal’s adaptation for use in HIV care, over 90% were interested in a portal that would offer an appointment schedule; notifications and reminders (e.g., for medications); and the use of PROMs for individual patient care9. For use with Opal, we are creating a new PROM, the I-Score, to detect and help manage barriers to antiretroviral therapy adherence that, through consultations, has been deemed relevant by both patients and clinicians10.
Furthermore, certain practical barriers to adherence, such as dosing and travelling with medications, will be addressed with our new ‘intelligent conversational agent’ (ICA), a chatbot named MARVIN (Minimal ARV Interference). Via Facebook messenger, our chatbot engages patients with naturalistic conversations. It is available 24 hours a day, confidential, communicates via text or voice messaging, and shares accurate information, determined with our pharmacist partners11.
Warm health technology
Concerns with the use of mHealth can emerge from the distinction drawn between ‘warm care’ and ‘cold technology’12. This dichotomy may be blurred with the involvement of stakeholders in mHealth development. Through such practices as codesign and patient engagement, mHealth may increase its potential to help people living with HIV to help themselves.
- Swendemana D., Ingramb B.L., and Rotheram-Borusa M.J., Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care 2009. 21(10): p. 1321-1334.
- Impact on life expectancy of HIV-1 positive individuals of CD4+ cell count and viral load response to antiretroviral therapy.May MT, Gompels M, Delpech V, Porter K, Orkin C, Kegg S, Hay P, Johnson M, Palfreeman A, Gilson R, Chadwick D, Martin F, Hill T, Walsh J, Post F, Fisher M, Ainsworth J, Jose S, Leen C, Nelson M, Anderson J, Sabin C, UK Collaborative HIV Cohort (UK CHIC) Study.AIDS. 2014 May 15; 28(8):1193-202.
- Marcus JL et al. Increased overall life expectancy but not comorbidity-free years for people with HIV. Conference on Retroviruses and Opportunistic Infections, abstract 151, March 2020.
- Muessig KE, Nekkanti M, Bauermeister J, Bull S, Hightow-Weidman LB. A systematic review of recent smartphone, Internet and Web 2.0 interventions to address the HIV continuum of care. Curr HIV/AIDS Rep. 2015;12(1):173-190.
- WHO Library Cataloguing-in-Publication Data mHealth: New horizons for health through mobile technologies: second global survey on eHealth,2011, 112 pages, https://www.who.int/goe/publications/goe_mhealth_web.pdf
- Marent B, Henwood F, Darking M, EmERGE Consortium Development of an mHealth platform for HIV Care: Gathering User Perspectives Through Co-Design Workshops and Interviews JMIR Mhealth Uhealth 2018;6(10):e184
- Rowland, S.P., Fitzgerald, J.E., Holme, T. et al. What is the clinical value of mHealth for patients?. npj Digit. Med. 3, 4 (2020). https://doi.org/10.1038/s41746-019-0206-x
- Kildea J, Battista J, Cabral B, Hendren L, Herrera D, Hijal T, Joseph A Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design, J Med Internet Res 2019;21(2): e11371
- Lessard D, Ma Y, Chu D, Lacombe K, Schuster T, Engler K, Hijal T, Kildea J, Vicente S, de Pokomandy A, Sheehan NL, Routy JP, Lebouché B, Évaluation des besoins de personnes vivant avec le VIH et de leurs soignants pour l’adaptation d’un portail patient connecté (Opal). Poster présenté à la 10e Conférence Internationale Francophone VIH/Hépatites/Santé sexuelle AFRAVIH 2020, Dakar (Sénégal), 19-22 avril 2020 (postponed). Accepted January 14, 2020
- Engler K, Ahmed S, Lessard D, Vicente S, Lebouché B. Assessing the Content Validity of a New Patient-Reported Measure of Barriers to Antiretroviral Therapy Adherence for Electronic Administration in Routine HIV Care: Proposal for a Web-Based Delphi Study JMIR Res Protoc 2019;8(8):e12836
- Ma, Y. Meet Marvin, the chatbot: Using artificial intelligence to engage HIV patients in their antiretroviral therapy. Oral presentation given at the Workshop for Healthy Living with HIV, #O_03
- J. Pols, I. Moser Cold technologies versus warm care? On affective and social relations with and through care technologies ALTER – Eur. J. Disability Res./Revue Européenne de Recherche sur le Handicap, 3 (2) (2009), pp. 159-178, 10.1016/j.alter.2009.01.003
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