Study update and design directions for the development of a European e-Health platform for individuals with Huntington’s Disease and their partners (HD-eHelp study)
Pearl J. C. van Lonkhuizen1,2,3, Niko J. H. Vegt1,2, Eline Meijer1,2, Erik van Duijn3,4, Susanne T. de Bot5, Niels H. Chavannes1,2, Anne-Wil Heemskerk1,3 on behalf of the HEALTHE-RND consortium
1 Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands
2 National eHealth Living Lab, Leiden University Medical Center, Leiden, the Netherlands
3 Huntington Center Topaz Overduin, Katwijk, the Netherlands
4 Department of Psychiatry, Leiden University Medical Center, Leiden, the Netherlands
5 Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands
eHealth seems promising in overcoming some important barriers to HD care provision (e.g., availability/accessibility of care, distance to centers)1,2,3. However, research on eHealth in HD is limited and fails to include eHealth services specifically designed to fit the expectations of patients and their families4-7. In the HD-eHelp study, we aim to develop a European eHealth platform targeting quality of life of both HD gene expansion carriers (HDGECs) and their partners at home8. We will provide an update of the eHealth development process, including preliminary results and their translation into design directions for further development of the platform.
Following the principles of user-centered design (UCD), the eHealth platform will be developed together with end-users (i.e., HDGECs, partners, and HCPs) from the Netherlands, Czech Republic, Germany, Italy, and Ireland. End-users will be involved in all three stages of the UCD process: 1) Exploration of end-users’ needs, experiences and wishes; 2) Development of concepts of the platform; and 3) Detailing of final prototype8.
Preliminary results and design directions
Online interviews with 12 Dutch HDGECs and 12 partners during the exploration phase yielded 4 design directions for the eHealth platform: 1) Increase accessibility of care by lowering the threshold through online support; 2) Facilitate navigation through the knowledge landscape, such as including more reassuring information, peer experiences, and tailoring information to the end-user’s situation; 3) Support specific wishes/needs by increasing accessibility to this information (e.g., contributing to research, following medicine developments); and 4) Provide an overview of (digital) tools for coping with symptoms, such as a webshop or referrals. Elaborations on these directions during co-creation sessions with the same participants and the data from the other participating countries will assist further development of these concepts into prototypes.
Based on the preliminary results, the eHealth platform should function as a trustworthy safety net for those affected by HD, where reassuring and reliable information/tools, referrals, and peer/professional support can be found. Definitive design choices for the final prototype will be evaluated by end-users and further developed into a fully functional eHealth platform for implementation in all countries involved8.
eHealth, user-centered design, quality of life
1. Bates GP, Tabrizi SJ, Jones L. Huntington’s Disease. 4th ed. New York, NY: Oxford University Press (2014).
2. Edmondson MC, Goodman L. Contemporary health care for Huntington disease. In: Feigin AS, Anderson KE, editors. Handbook of Clinical Neurology. 144 (3rd series) Huntington Disease. Elsevier (2017).
3. Dorsey ER, Glidden AM, Holloway MR, Birbeck GL, Schwamm LH. Teleneurology and mobile technologies: the future of neurological care. Nat Rev Neurol. (2018) 14:285–97. doi: 10.1038/nrneurol.2018.31
4. de Man J, de Jager L, Kleiterp J, Engelhard D, Achterberg W. K10 E-health support for community residing HD patients: report of a pilot-project. J Neurol Neurosurg Psychiatry. (2016) 87(Suppl. 1):A82–3. doi: 10.1136/jnnp-2016-3145 97.233
5. Bull MT, Darwin K, Venkataraman V, Wagner J, Beck CA, Dorsey ER, et al. A pilot study of virtual visits in Huntington disease. J Huntingtons Dis. (2014) 3:189–95. doi: 10.3233/JHD-140102
Hawkins AK, Creighton S, Ho A, McManus B, Hayden MR. Providing predictive testing for Huntington disease via telehealth: results of a pilot study in British Columbia, Canada. Clin Genet. (2013) 84:60– 4. doi: 10.1111/cge.12033
6. Hawkins AK, Creighton SM, Hayden MR. Developing a comprehensive, effective patient-friendly website to enhance decision making in predictive testing for Huntington disease. Genet Med. (2013) 15:466–72. doi: 10.1038/gim.2012.149
7. Frich JC, Rae D, Roxburgh R, Miedzybrodzka ZH, Edmondson M, Pope EB, et al. Health care delivery practices in Huntington’s disease specialty clinics: an international survey. J Huntingtons Dis. (2016) 5:207– 13. doi: 10.3233/JHD-160192
8. van Lonkhuizen PJC, Vegt NJH, Meijer E, van Duijn E, de Bot ST, Klempírˇ J, Frank W, Landwehrmeyer GB, Mühlbäck A, Hoblyn J, Squitieri F, Foley P, Chavannes NH and Heemskerk A-W. (2021). Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington’s Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach. Front. Neurol. 12:719460. doi: 10.3389/fneur.2021.719460