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Exploring Human Values in the Design of a Web-Based QoL-Instrument for People with Mental Health Problems: A Value Sensitive Design Approach

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Abstract

Quality of life (QoL) is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of the QoL-instrument. The value sensitive design (VSD) approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, (redistribution) of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed.

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Notes

  1. mHealth is part of eHealth—the use of information and communication technologies (ICT) for health.

  2. See Winkler and Spiekermann-Hoff (2018) for a complete review of the academic literature on VSD between 1996 and 2016.

  3. See Van Gestel-Timmermans et al. (2010) for a description of this course.

  4. See Van de Poel (2013) on how to translate values into design requirements.

  5. Patient empowerment has become an important treatment goal in mental health care (Van Gestel-Timmermans et al. 2012).

  6. see Winkler and Spiekermann-Hoff (2018) for a complete review of the academic literature on VSD between 1996 and 2016.

References

  • Adams, S. A. (2006). Under construction: Reviewing and producing information reliability on the web. Rotterdam: Erasmus University.

    Google Scholar 

  • Adams, S., & Niezen, M. (2016). Digital ‘solutions’ to unhealthy lifestyle ‘problems’: The construction of social and personal risks in the development of eCoaches. Health, Risk & Society,17(7–8), 530–546.

    Article  Google Scholar 

  • Adams, S., Purtova, N., & Leenes, R. (Eds.). (2017). Under observation: The interplay between eHealth and surveillance. Berlin: Springer.

    Google Scholar 

  • Albrechtslund, A. (2007). Ethics and technology design. Ethics and Information Technology,9(1), 63–72.

    Article  Google Scholar 

  • Anderson, J., Klein, M., Beun, R. J., Boh, B., Kamphorst, B., Rajper, A. M., Middelweerd, A., Mollee, J., Nauts, S.Roefs, A., & te Velde, S. (2015). Healthy lifestyle solutions. Whitepaper, National Initiative Brain & Cognition.

  • Anthony, K., Nagel, D. M., & Goss, S. (Eds.). (2010). The use of technology in mental health: Applications, ethics and practice. Springfield, IL: Charles C. Thomas Publishers.

    Google Scholar 

  • Bleumers, L., Mouws, K., Huyghe, J., Van Mechelen, M., Mariën, I., & Zaman, B. (2015). Sensitivity to parental play beliefs and mediation in young children’s hybrid play activities. In Proceedings of the 14th international conference on interaction design and children (pp. 170–177). ACM.

  • Borning, A., Friedman, B., Davis, J., & Lin, P. (2005). Informing public deliberation: Value sensitive design of indicators for a large-scale urban simulation. In ECSCW 2005 (pp. 449–468). Dordrecht: Springer.

  • Boyd, K., Rule, A., Tabard, A., & Hollan, J. (2016). Sharing, human values, and computer activity tracking. In Proceedings of the 19th ACM conference on computer supported cooperative work and social computing companion (pp. 233–236). ACM.

  • Burmeister, O. K. (2016). The development of assistive dementia technology that accounts for the values of those affected by its use. Ethics and Information Technology,18, 185–198.

    Article  Google Scholar 

  • Catwell, L., & Sheikh, A. (2009). Evaluating eHealth interventions: The need for continuous systemic evaluation. PLoS Medicine,6(8), e1000126.

    Article  Google Scholar 

  • Correljé, A., Cuppen, E., Dignum, M., Pesch, U., & Taebi, B. (2015). Responsible innovation in energy projects: Values in the design of technologies, institutions and stakeholder interactions. In B. J. Koops, I. Oosterlaken, H. Romijn, T. Swierstra, & J. van den Hoven (Eds.), Responsible innovation 2 (pp. 183–200). Cham: Springer.

    Google Scholar 

  • Dahl, Y., & Holbø, K. (2012). Value biases of sensor-based assistive technology: Case study of a GPS tracking system used in dementia care. In Proceedings of the designing interactive systems conference (pp. 572–581). ACM.

  • Day, J. C., Bentall, R. P., Roberts, C., Randall, F., Rogers, A., Cattell, D., et al. (2005). Attitudes toward antipsychotic medication: The impact of clinical variables and relationships with health professionals. Archives of General Psychiatry,62(7), 717–724.

    Article  Google Scholar 

  • Denning, T., Borning, A., Friedman, B., Gill, B. T., Kohno, T., & Maisel, W. H. (2010). Patients, pacemakers, and implantable defibrillators: Human values and security for wireless implantable medical devices. In Proceedings of the SIGCHI conference on human factors in computing systems (pp. 917–926). ACM.

  • Dignum, M., Correljé, A., Cuppen, E., Pesch, U., & Taebi, B. (2016). Contested technologies and design for values: The case of shale gas. Science and Engineering Ethics,22(4), 1171–1191.

    Article  Google Scholar 

  • Donker, T., Petrie, K., Proudfoot, J., Clarke, J., Birch, M. R., & Christensen, H. (2013). Smartphones for smarter delivery of mental health programs: A systematic review. Journal of Medical Internet Research, 15(11), e247. https://doi.org/10.2196/jmir.2791.

    Article  Google Scholar 

  • Epstein, D. A., Borning, A., & Fogarty, J. (2013). Fine-grained sharing of sensed physical activity: A value sensitive approach. In Proceedings of the 2013 ACM international joint conference on pervasive and ubiquitous computing (pp. 489–498). ACM.

  • Friedman, B., & Hendry, D. G. (2019). Value sensitive design: Shaping technology with moral imagination. Cambridge: MIT Press.

    Book  Google Scholar 

  • Friedman, B., Hendry, D. G., & Borning, A. (2017). A survey of value sensitive design methods. Foundations and Trends® in Human–Computer Interaction,11(2), 63–125.

    Article  Google Scholar 

  • Friedman, B., Kahn, P., & Borning, A. (2002). Value sensitive design: Theory and methods. Washington: University of Washington.

    Google Scholar 

  • Friedman, B., Kahn, P. H., & Borning, A. (2008). Value sensitive design and information systems. In K. E. Himma & H. T. Tavani (Eds.), The handbook of information and computer ethics (pp. 69–101). Hoboken: Wiley.

    Chapter  Google Scholar 

  • Friedman, B., Kahn, P. H., Borning, A., & Huldtgren, A. (2013). Value sensitive design and information systems. In N. Doorn, D. Schuurbiers, I. van de Poel, & M. Gorman (Eds.), Early engagement and new technologies: Opening up the laboratory (pp. 55–95). Dordrecht: Springer.

    Chapter  Google Scholar 

  • Geesink, I., Heerings, M., & van Egmond, S. (2016). De meetbare mens: Digitaal meten van het zieke en gezonde lichaam. Den Haag: Rathenau Instituut.

    Google Scholar 

  • Haggerty, K. D., & Ericson, R. V. (2000). The surveillant assemblage. The British Journal of Sociology,51(4), 605–622.

    Article  Google Scholar 

  • Harris, R., Wathen, N., & Wyatt, S. (Eds.). (2010). Configuring health consumers: Health work and the imperative of personal responsibility. Berlin: Springer.

    Google Scholar 

  • Howgego, I. M., Yellowlees, P., Owen, C., Meldrum, L., & Dark, F. (2003). The therapeutic alliance: The key to effective patient outcome? A descriptive review of the evidence in community mental health case management. Australian and New Zealand Journal of Psychiatry,37(2), 169–183.

    Article  Google Scholar 

  • Hyysalo, S., Jensen, T. E., & Oudshoorn, N. (Eds.). (2016). The new production of users: Changing innovation collectives and involvement strategies. London: Routledge.

    Google Scholar 

  • Ihde, D. (1990). Technology and the lifeworld., The Indiana series in the philosophy of technology Bloomington: Indiana University Press.

    Google Scholar 

  • Kaplan, B., & Litewka, S. (2008). Ethical challenges of telemedicine and telehealth. Cambridge Quarterly of Healthcare Ethics,17(4), 401–416.

    Article  Google Scholar 

  • Kiran, A. H., Oudshoorn, N., & Verbeek, P. P. (2015). Beyond checklists: Toward an ethical-constructive technology assessment. Journal of responsible innovation,2(1), 5–19.

    Article  Google Scholar 

  • Konrad, K., Rip, A., & Greiving-Stimberg, V. C. S. (2017). Constructive Technology Assessment–STS for and with technology actors. EASST review. https://easst.net/article/constructive-technology-assessment-sts-for-and-with-technology-actors.

  • Kool, L., Timmer, J., & van Est, Q. C. (2013). Keuzes voor de e-coach: maatschappelijke vragen bij de automatisering van de coachingspraktijk. Den Haag: Rathenau Instituut.

    Google Scholar 

  • Kudina, O., & Verbeek, P. P. (2019). Ethics from within: Google Glass, the Collingridge dilemma, and the mediated value of privacy. Science, Technology and Human Values,44(2), 291–314.

    Article  Google Scholar 

  • Lucivero, F., & Jongsma, K. R. (2018). A mobile revolution for health care? Setting the agenda for bioethics. Journal of Medical Ethics,44, 685–689.

    Article  Google Scholar 

  • Lupton, D. (2012). M-health and health promotion: The digital cyborg and surveillance society. Social Theory & Health,10(3), 229–244.

    Article  Google Scholar 

  • Lupton, D. (2013a). Quantifying the body: Monitoring and measuring health in the age of mHealth technologies. Critical Public Health,23(4), 393–403.

    Article  Google Scholar 

  • Lupton, D. (2013b). The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social Theory & Health,11(3), 256–270.

    Article  Google Scholar 

  • Lupton, D. (2013c). Digitized health promotion: personal responsibility for health in the web 2.0 era. Working Papers—Sydney Health & Society Group.

  • Lupton, D. (2014). Health promotion in the digital era: A critical commentary. Health Promotion International,30(1), 174–183.

    Article  Google Scholar 

  • Lupton, D. (2016). Digital companion species and eating data: Implications for theorising digital data–human assemblages. Big Data & Society. https://doi.org/10.1177/2053951715619947.

    Article  Google Scholar 

  • Luxton, D. D., McCann, R. A., Bush, N. E., Mishkind, M. C., & Reger, G. M. (2011). mHealth for mental health: Integrating smartphone technology in behavioral health care. Professional Psychology: Research and Practice,42(6), 505.

    Article  Google Scholar 

  • Maathuis, I. J. H. (2015). Technologies of compliance? Telecare technologies and self-management of chronic patients. Enschede: University of Twente.

    Google Scholar 

  • Martínez-Ortiz, I., Moreno-Ger, P., Sierra, J. L., & Fernández-Manjón, B. (2006). Production and maintenance of content-intensive videogames: A document-oriented approach. In Third international conference on information technology: New generations, 2006. ITNG 2006 (pp. 118–123). IEEE.

  • McManus, J. (2009). The ideology of patient information leaflets: A diachronic study. Discourse & Communication,3(1), 27–56.

    Article  Google Scholar 

  • Miller, J. K., Friedman, B., Jancke, G., & Gill, B. (2007). Value tensions in design: The value sensitive design, development, and appropriation of a corporation’s groupware system. In Proceedings of the 2007 international ACM conference on supporting group work (pp. 281–290). ACM.

  • Millington, B. (2009). Wii has never been modern: ‘Active’ video games and the ‘conduct of conduct’. New Media & Society,11(4), 621–640.

    Article  Google Scholar 

  • Mort, M., May, C. R., & Williams, T. (2003). Remote doctors and absent patients: Acting at a distance in telemedicine? Science, Technology and Human Values,28(2), 274–295.

    Article  Google Scholar 

  • Mort, M., Roberts, C., & Callén, B. (2013). Ageing with telecare: Care or coercion in austerity? Sociology of Health & Illness,35(6), 799–812.

    Article  Google Scholar 

  • Mort, M., & Smith, A. (2009). Beyond information: Intimate relations in sociotechnical practice. Sociology,43(2), 215–231.

    Article  Google Scholar 

  • Niezen, M., Adams, S., Purtova, N., & Vedder, A. (2015). Socially robust eCoaching: Dealing with the ethical and legal preconditions for eCoaching acceptance. TILT: Tilburg University.

    Google Scholar 

  • Oosterlaken, I. (2014). Applying value sensitive design (VSD) to Wind turbines and wind parks: An exploration. Science and Engineering Ethics,21(2), 359–379.

    Article  Google Scholar 

  • Oudshoorn, N. (2011). Telecare technologies and the transformation of health care. Basingstoke: Palgrave Macmillan.

    Book  Google Scholar 

  • Oudshoorn, N., & Pinch, T. (2003). How users matter. The co-construction of users and technology. Cambridge, MA: MIT Press.

    Book  Google Scholar 

  • Oudshoorn, N., & Pinch, T. (2008). User–technology relationships: Some recent developments. In E. J. Hackett, O. Amsterdamska, M. Lynch, & J. Wajcman (Eds.), The handbook of science and technology studies (pp. 541–566). Cambridge, MA: MIT Press.

    Google Scholar 

  • Oudshoorn, N., Rommes, E., & Stienstra, M. (2004). Configuring the user as everybody: Gender and design cultures in information and communication technologies. Science, Technology and Human Values,29(1), 30–63.

    Article  Google Scholar 

  • Owen, R., Macnaghten, P., & Stilgoe, J. (2012). Responsible research and innovation: From science in society to science for society, with society. Science and Public Policy,39(6), 751–760.

    Article  Google Scholar 

  • Prainsack, B. (2018). Muireann Quigley, self-ownership, property rights, and the human body: A legal and philosophical analysis. Medical Law Review, 27(2), 358–362. https://doi.org/10.1093/medlaw/fwy036.

    Article  Google Scholar 

  • Price, M., Yuen, E. K., Goetter, E. M., Herbert, J. D., Forman, E. M., Acierno, R., et al. (2014). mHealth: A mechanism to deliver more accessible, more effective mental health care. Clinical Psychology & Psychotherapy,21(5), 427–436.

    Article  Google Scholar 

  • Quackenbush, D. M., & Krasner, A. (2012). Avatar therapy: Where technology, symbols, culture, and connection collide. Journal of Psychiatric Practice,18(6), 451–459.

    Article  Google Scholar 

  • Raad voor de Volksgezondheid en Zorg (RVZ). (2015). Consumenten-eHealth. Den Haag.

  • Raad voor Volksgezondheid en Samenleving (RVS). (2017). De zorgagenda voor een gezonde samenleving. Den Haag.

  • Rip, A., & Te Kulve, H. (2008). Constructive Technology Assessment and socio-technical scenarios. In E. Fisher, C. Selin, & J. M. Wetmore (Eds.), The yearbook of nanotechnology in society, Vol. 1: Presenting futures (pp. 49–70). Berlin: Springer.

    Chapter  Google Scholar 

  • Santoni de Sio, F., & Van den Hoven, J. (2018). Meaningful human control over autonomous systems: A philosophical account. Frontiers in Robotics and AI,5, 15.

    Article  Google Scholar 

  • Schikhof, Y., Mulder, I., & Choenni, S. (2010). Who will watch (over) me? Humane monitoring in dementia care. International Journal of Human–Computer Studies,68(6), 410–422.

    Article  Google Scholar 

  • Schippers, E. I., & Van Rijn, M. J. (2014). Brief aan de Voorzitter van de Tweede Kamer betreffende e-health en zorgverbetering [Letter of government]. Den Haag: Ministerie van Volksgezondheid, Welzijn en Sport. Retrieved September 2, 2015, from https://www.rijksoverheid.nl/binaries/rijksoverheid/documenten/kamerstukken/2014/07/02/kamerbrief-over-e-health-en-zorgverbetering/kamerbrief-over-e-health-en-zorgverbetering.pdf.

  • Scholz, T. (2008). Market ideology and the myths of Web 2.0. First Monday, 13(3).

  • Sharon, T. (2017). Self-tracking for health and the quantified self: Re-articulating autonomy, solidarity, and authenticity in an age of personalized healthcare. Philosophy & Technology,30(1), 93–121.

    Article  Google Scholar 

  • Sontag, S. (2001). Illness as metaphor and AIDS and its metaphors. New York: Macmillan.

    Google Scholar 

  • Sorell, T., & Draper, H. (2012). Telecare, surveillance, and the welfare state. The American Journal of Bioethics,12(9), 36–44.

    Article  Google Scholar 

  • Steijn, W. M., Schouten, A. P., & Vedder, A. H. (2016). Why concern regarding privacy differs: The influence of age and (non-) participation on Facebook. Cyberpsychology: Journal of Psychosocial Research on Cyberspace. https://doi.org/10.5817/CP2016-1-3.

    Article  Google Scholar 

  • Steijn, W. M., & Vedder, A. (2015). Privacy under construction: A developmental perspective on privacy perception. Science, Technology and Human Values,40(4), 615–637.

    Article  Google Scholar 

  • Stewart, J., & Williams, R. (2005). The wrong trousers? Beyond the design fallacy: Social learning and the user. In H. Rorhacher (Ed.), User involvement in innovation processes. Strategies and limitations from a socio-technical perspective (pp. 39–71). Munich: Profil.

    Google Scholar 

  • Thomas, R. K. (2006). Health communication. Berlin: Springer.

    Google Scholar 

  • Timmermans, J., Zhao, Y., & van den Hoven, J. (2011). Ethics and nanopharmacy: Value sensitive design of new drugs. Nanoethics,5(3), 269–283.

    Article  Google Scholar 

  • Umbrello, S. (2019). Atomically precise manufacturing and responsible innovation: A value sensitive design approach to explorative nanophilosophy. International Journal of Technoethics,10(2), 1–21.

    Article  Google Scholar 

  • Umbrello, S., & De Bellis, A. F. (2018). A value-sensitive design approach to intelligent agents. In R. Yampolskiy (Ed.), Artificial intelligence safety and security. Boca Raton: CRC Press.

    Google Scholar 

  • Van Boekel, L. C. (2015). Stigmatization of people with substance use disorders: Attitudes and perceptions of clients, healthcare professionals and the general public. Enschede: Ipskamp Drukkers.

    Google Scholar 

  • Van de Poel, I. (2013). Translating values into design requirements. In D. Michelfelder, N. McCarthy, & D. Goldberg (Eds.), Philosophy and engineering: Reflections on practice, principles and process (pp. 253–266). Amsterdam: Springer.

    Chapter  Google Scholar 

  • Van den Hoven, J. (2013). Value sensitive design and responsible innovation. In R. Owen, J. Bessant, & M. Heintz (Eds.), Responsible innovation—managing the responsible emergence of science and innovation in society (pp. 75–84). West Sussex: Wiley.

    Chapter  Google Scholar 

  • Van Gestel-Timmermans, H., Brouwers, E. P., Van Assen, M. A., & Van Nieuwenhuizen, Ch. (2012). Effects of a peer-run course on recovery from serious mental illness: A randomized controlled trial. Psychiatric Services,63(1), 54–60.

    Article  Google Scholar 

  • Van Gestel-Timmermans, J. A. W. M., Brouwers, E. P. M., & Van Nieuwenhuizen, C. (2010). Recovery is up to you, a peer-run course. Psychiatric Services,61(9), 944–945.

    Article  Google Scholar 

  • Van Wynsberghe, A. (2013). Designing robots for care: Care centered value-sensitive design. Science and Engineering Ethics,19(2), 407–433.

    Article  Google Scholar 

  • Vedder, A., Cuijpers, C., Vantsiouri, P., & Ferrari, M. Z. (2014). The law as a ‘catalyst and facilitator ‘for trust in e-health: Challenges and opportunities. Law, Innovation and Technology,6(2), 305–325.

    Article  Google Scholar 

  • Vedder, A. H., Vantsiouri, P., & Christianen, K. (2012). Trust and e-Health care: A conceptual and legal analysis. Tilburg: TILT.

    Google Scholar 

  • Verbeek, P. P. (2011). Moralizing technology: Understanding and designing the morality of things. Chicago: University of Chicago Press.

    Book  Google Scholar 

  • Webster, A. (2002). Innovative health technologies and the social: Redefining health, medicine and the body. Current Sociology,50(3), 443–457.

    Article  Google Scholar 

  • Winkler, T., & Spiekermann-Hoff, S. (2018). Twenty years of value sensitive design: A review of methodological practices in VSD projects. Ethics and Information Technology. https://doi.org/10.1007/s10676-018-9476-2.

    Article  Google Scholar 

  • Woolgar, S. (1991). Configuring the User: The case of usability trials. In J. Law (Ed.), A sociology of monsters: Essays on power, technology and domination (pp. 58–99). London: Routledge.

    Google Scholar 

  • World Health Organization. (2011). mHealth: New horizons for health through mobile technologies: based on the findings of the second global survey on eHealth. Global Observatory for eHealth Series (Vol. 3). Geneva: World Health Organization. Retrieved February 9, 2015, from http://www.who.int/goe/publications/goe_mhealth_web.pdf.

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Acknowledgements

This work is part of the research program “Quality of Life and Health,” Project Number 319-20-005, which is financed by the Netherlands Organization for Scientific Research (NWO). The authors would like to thank the anonymous participants for their contribution to this research and the anonymous reviewers for their valuable suggestions to improve this manuscript. Finally, the authors would like to thank HAN University of Applied Sciences (Arnhem, The Netherlands) and the Rathenau Institute (The Hague, The Netherlands) for their cooperation.

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  1. Ivo Maathuis

    Present address: HAN University of Applied Sciences, Arnhem, The Netherlands

  2. Maartje Niezen

    Present address: Rathenau Institute, The Hague, The Netherlands

Authors and Affiliations

  1. Scientific Center for Care and Wellbeing (Tranzo), Tilburg University, Tilburg, The Netherlands

    Ivo Maathuis, David Buitenweg, Ilja L. Bongers & Chijs van Nieuwenhuizen

  2. Tilburg Institute for Law, Technology, and Society (TILT), Tilburg, The Netherlands

    Maartje Niezen

  3. GGzE, Institute for Mental Health Care, Eindhoven, The Netherlands

    David Buitenweg, Ilja L. Bongers & Chijs van Nieuwenhuizen

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Maathuis, I., Niezen, M., Buitenweg, D. et al. Exploring Human Values in the Design of a Web-Based QoL-Instrument for People with Mental Health Problems: A Value Sensitive Design Approach. Sci Eng Ethics 26, 871–898 (2020). https://doi.org/10.1007/s11948-019-00142-y

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