Transition Cards: Designing a method with and for Young Patients | Margaret Machniak Sommervold, Maja van der Velden (2015)
In: IADIS International Journal on Computer Science and Information Systems, Vol. 10, No. 2, pp. 79-94 Abstract: Participatory Design (PD) is a methodology concerned with bringing the voices of future users into the design process, as well as with the design of tools and methods that enable the participants to engage in design activities. While user participation in design of new technologies is a well-researched field, this paper presents user participation in the design, implementation, and appropriation of a card-based method. The purpose of the method was to support young patients in organizing and explaining their experiences and expectations surrounding their transition from pediatrics to adult healthcare. Application of PD and the concept of cool in the process of designing the method resulted in a method that the participating young patients could redesign and appropriate to better fit their particular situation. Hence, Participatory Design processes, enable the appropriation of the methods, rather than mastery of the methods. This appropriation may increase the space for mutual learning and may result in better methods and participant-empowerment.
The Digital Live of Vulnerable Users: designing with children, patients, and elderly | Alma Culén, Maja van der Velden (2013)
In: Nordic Contributions in IS Research : 4th Scandinavian Conference on Information Systems, Springer, pp. 53-71 Abstract: Vulnerability is about being at risk and it is often understood as the effect of limited physical or cognitive capabilities, such as age, frailty or illness. Vulnerable people are frequently excluded from the design of technologies that could in fact support them in tackling these risks. This paper explores designing with three vulnerable groups: children with special needs, chronically ill teenage patients, and isolated, or afraid of being so in the near future, elderly adults. We choose three distinct groups in order to show the breadth and variations in the ways in which people may be vulnerable. We looked at their digital lives and possible new risks and dependencies created by the use of digital technologies. Designing with vulnerable people is practically, methodologically, and ethically challenging. We show how methodological and reflexive sensibilities help to address these challenges and keep the design process on track.
"Not all my friends need to know": a qualitative study of teenage patients, privacy, and social media | Maja van der Velden, Khaled El Emam (2013)
In: Journal of the American Medical Informatics Association (JAMIA), 20(1), pp. 16-24. Abstract: Background: The literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media. Objective: To understand how chronically ill teenage patients manage their privacy on social media sites. Design: A qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12–18 years). Results: Most teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a “regular”, rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life—it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don't use social media to come into contact with others with similar conditions and they don't use the internet to find health information about their diagnosis. Conclusions: Social media play an important role in the social life of teenage patients. They enable young patients to be “regular” teenagers. Teenage patients' online privacy behavior is an expression of their need for self-definition and self-protection.
Konferansebidrag | Conference papers
MoodLine and MoodMap: Designing a Mood Function for a Mobile Application with and for Young Patients | Maja van der Velden (2016) TELEMED 2016 : The Eighth International Conference on eHealth, Telemedicine, and Social Medicine (with DIGITAL HEALTHY LIVING 2016 / MATH 2016): ThinkMind, pp. 214-219. Abstract: Tracking mood or emotional experiences over time is a popular function found in mobile health applications. In this study, young patients with chronic health challenges consider this also an important function of a multifunctional app supporting them in the transition to adult care. At the same time they expressed the need to be seen as a young person, not a diagnosed body. A lifeworld-led design approach, based on a Participatory Design methodology, resulted in a mood tracking and a mood mapping design, which was meaningful to the young persons’ everyday experiences. Photos tagged with colors representing different emotional states were chosen as the best way to represent their moods. An overview of moods, by day as well as by color, gives an understanding of the wider context in which these moods appear and can play a motivational role in dealing with a difficult day or episode in their lives.
Sense-Making in Complex Healthcare Domains: The Role of Technology in Every Day Lives of Youth Suffering from ME/CFS | Jorun Børsting, Alma Leora Culén (2016) TELEMED 2016 : The Eighth International Conference on eHealth, Telemedicine, and Social Medicine (with DIGITAL HEALTHY LIVING 2016 / MATH 2016): ThinkMind, pp. 236-242. Abstract: In this paper, we argue that the technology design needs to take a more holistic perspective, well beyond opportunities offered by the technology development alone. This is especially important when developing technologies for complex domains, such as healthcare, and with users who are at risk. We propose a sense-making process that helps human-computer interaction researchers/designers to develop a broader understanding of such complex domains in which they often have no expert knowledge. We exemplify our approach by exploring the complex domain related to the design of technologies that could support youth with Myalgic Encephalomyelitis to cope better with their situation. The approach is based on a combination of user research, Actor-Network Theory adapted to the design context, a complex systems design tool (Giga-mapping) and a literature review. We find that this approach leads researchers to reflect deeper over the domain complexities, and to avoid solving problems that do not untangle complexity or lead to real-life solutions. Our conclusion is that such initial sense-making processes are fundamental when considering the design of new technologies for healthcare, and with vulnerable users.
Technology for Transition: Needs and Preferences of Young Patients | Margaret Machniak Sommervold, Maja van der Velden (2016) eTELEMED 2016 : The Eighth International Conference on eHealth, Telemedicine, and Social Medicine (with DIGITAL HEALTHY LIVING 2016 / MATH 2016): ThinkMind, pp. 257-262. Abstract: This paper presents a study of the technology needs of young patients with Irritable Bowel Disease, who are in the process of transitioning from pediatrics to adult-centered healthcare. The study is part of a Participatory Design process and is based on the assumption that information and communications technologies can potentially support young patients in achieving increasing independence from parental support and in engaging with their own healthcare. We argue in favor of designing for context-awareness and appropriation in technologies for young patients in transition.
Patient-Initiated Personalisation: Privacy, Moods and Colours | Maja van der Velden, Margaret Machniak Sommervold, Alma Leora Culén (2015) Proceedings of the International Conference on e-Health 2015.: IADIS Press, pp. 95 - 103. Abstract: Personalisation can improve the acceptability and prolonged use of a product. This paper reports on the use of colours in user-initiated personalisation of privacy settings and a mood tracker. Colours and their associations were discussed in participatory design activities with young patients (13-21 years old) in a children's hospital in Canada and in Norway and explored in a survey among university students. Colours are an effective way to personalise data. The young patients preferred to select their own colours for the personalisation of data and that colour associations and preferences should be re-configurable during the use of the technology. We found that in the case of the privacy settings that re-configuration could lead to privacy risks. We illustrate our findings by presenting two prototypes we designed with and for young people with chronic health challenges. The first one shows the use of colours in privacy settings in a social networking site for teenage patients and the second one shows the use of colours in the mood tracking function of a mobile application supporting teens in their transition to adult health care.
Transition Cards: Designing a Card Sorting Method with and for teenage patients | Margaret Sommervold, Maja van der Velden (2015) Proceedings of the IADIS International Conference Interfaces and Human Computer Interaction: IADIS Press, pp. Abstract: This paper presents the process of designing and implementing a card-based method used in a Participatory Design process. The method was designed to support young patients in organizing and explaining their experiences and expectations surrounding their transition from pediatrics to adult healthcare. The paper argues in favor of not only including users in the design of new technologies, but also in the design of methods.
Colorful Privacy: Designing Visible Privacy Settings with Teenage Hospital Patients | Maja van der Velden, Margaret Machniak (2014) ACHI 2014, The Seventh International Conference on Advances in Computer-Human Interactions: ThinkMind, pp. 60-65. Abstract: The paper reports from a qualitative study based on the analysis of semi-structured interviews and Participatory Design activities with hospitalised teenagers with chronic health challenges. We studied how teenage patients manage their online privacy, with a focus on the design and use of privacy settings. We found that the majority of participants preferred to visualise privacy settings through the use colours and to personalise access control. They also considered these necessary on more secure patient-centred social media. As proof of concept, we implemented some of the findings in a patient social network setting. We conclude that visualising and personalising privacy settings enable young patients to have more control over the sharing of personal information and may result in a more effective use of privacy settings. In addition, privacy-aware default settings may prevent teens from unintended sharing of personal information.
In pursuit of cool and its implications for the design process | Margaret Machniak (2014)
In Strano, Michele; Herbert Hrachovec; Suely Fragoso (eds.), Proceedings of the Ninth International Conference on Cultural Attitudes in computer-Human Interactions: Oslo, Norway, Canada, 17-20 June 2014 (forthcoming) Abstract: Marketers have long understood the value of cool as a predicator of consumer behavior. Recently, researchers within the field of Design of information systems have taken an interest in the concept and how it can be used in the design process in order to design more engaging technologies. Yet there is little research and design with teenagers. This paper describes how using cool as a design guideline in a participatory design approach affected the process and the outcome. The novelty in this approach was that cool was frontloaded throughout the project with the objective of designing a health-oriented social networking site with and for teenagers. The study demonstrates how cool contributes so that teenagers and teenage patients can participate on their own terms in a design process, resulting in mutual learning and a more engaging process and end result.
Challenges in Designing Learning Apps for and with Vulnerable Children | Alma Culén, Maja van der Velden, Anna Karpova (2013)
CHI 2013, Workshop: Designing for and with Vulnerable People Abstract: In this paper we discuss some challenges in designing for and with vulnerable users, focusing primarily on touch-based interactions with personal artefacts such as tablets. Design of technology meant to assist vulnerable users is complicated by the complexity and variety of ways in which people may be considered as vulnerable users. In this paper, we relate the case of a special education class in an elementary school to show how, even for a small group of vulnerable users, it may be very difficult to find a common ground that may lead to a design of a learning tool for all of the involved students. Some of the challenges we met, were how to adapt our techniques and methods to working with this user group, how to use technology such as the iPad as an assistive tool helping with concentration difficulties in our case and ethical challenges.
Designing Privacy with Teenage Patients: Methodological Challenges | Maja van der Velden, Alma Culén (2013)
CHI 2013, Workshop: Methods of Working with Teenagers in Interaction Design Abstract: We report from a study with 16 teenage hospital patients, who participated in the design of the visibility of privacy settings in a social network. We describe some of the challenges of design work in a hospital setting, the methods we used in this study, and the development of a new method based on the ‘cool wall’.
Teenage Patient Privacy: Self-presentation and self-protection in social media | Maja van der Velden (2012) [draft paper on request]
Amsterdam Privacy Conference, University of Amsterdam, 07.10.10.2012 Abstract: Research on privacy and social media shows that self-presentation, how users want to be perceived by others, is an important motivation for online privacy strategies. This article investigates the relationship between the privacy strategies and self-presentations of teenager patients. Twenty chronically ill teens, 12 to 18 years old, were interviewed while receiving treatment in a children’s hospital in Canada. The qualitative analysis of the interviews focuses on the benefits and risks of using social media. Teenage patients perceive benefits as being able to stay in contact with family and friends. It also enables them to a ‘regular’ teenager online, even if their offline life is far from regular. Teenage patients perceive risks both now and in the future. They don’t want to be confronted with embarrassing questions and they don’t want to be seen as ‘always sick’. Some realise that the disclosure of their diagnosis may affect job opportunities. The understanding of the benefits and risks of being active in social media intersects with how the teens want to present themselves to others. They implement privacy strategies in which topic avoidance, not talking about their diagnosis and treatment, plays an important role. The study finds that teens’ online privacy strategies do not only contribute to the desired self-presentation, but also support teenage patients in protecting themselves while coping with a chronic illness.
In/visible bodies: On patients and privacy in a networked world | Maja van der Velden (2012) [pdf]
In: Cultural Attitudes towards Technology and Communication 2012, p. 199-211. Abstract: In the networked world, privacy and visibility become entangled in new and unexpected ways. This article uses the concept of networked visibility to explore the entanglement of technology and the visibility of patient bodies. Based on semi-structured interviews with patients active in social media, this paper describes how multiple patient bodies are produced in the negotiations between the need for privacy and the need for social interaction. Information technology is actively involved in these negotiations: patients use technology to make their bodies both visible and invisible. At the same time technology collects data on these patients, which can be used for undesired commercial and surveillance purposes. The notion of visibility by design may infuse design efforts that enable online privacy, supporting patients in the multiple ways they want to be visible and invisible online.
Sprinklr: Designing a ‘cool’ health-oriented social networking site with and for teenagers | Margaret Machniak (2013)
Master thesis. Department of Informatics, University of Oslo Abstract: Background: Teenagers with chronic health challenges are not disclosing their health on social media. Yet, social and emotional support has an impact on health. Currently there is no online health community in Norway targeting teenage patients. Initiatives such as Upopolis have failed to generate critical user mass because they were not age-appropriate. Objective: This study examines how a ‘cool’ online health community looks like when designing it with teenagers. The study aims to extend design guidelines from teenager’s perceptions of what is cool online and look at properties of ‘cool’. Methodology: The study is located within participatory design using qualitative methods to involve teenagers in the decision-making in the design process. With 9 teens a low fidelity but high resolution prototype was developed. The prototype was further evaluated using semi-structured prototyping interviews. Results: Using the cool wall made it possible to map what functions the teenagers perceive as cool. The analysis demonstrates that ‘cool’ is a situated and gendered concept and that teenagers are not satisfied with how social media are dealing with privacy settings. The teenagers want a health community to be entertaining and provide an option to contact health care professionals. They don’t want the site to be focused on illness and rather provide the users with entertainment. Conclusion: Cool can be used to design age-appropriate and engaging technology. The concept of ‘cool’ was useful in keeping the focus on what teens need or are interested in. Further research is needed into the concept of cool and involving other actors in the design of an online health community and the cool wall needs to be tested in hospital settings allowing for including bedridden patients.
Transisjonsapp - Ansvar for egen helse | Nora Aasen (2014)
Master thesis. Department of Informatics, University of Oslo Abstract: Bakgrunn: Unge, langtidssyke pasienter står ovenfor en vanskelig og krevende prosess når de skal overføres fra barne- og ungdomsavdeling og over til voksenavdeling. Behovet for å styrke autonomien, og lysten til å ta mer ansvar for egen sykdom, melder seg. Dette skjer på et tidspunkt der det ofte foregår andre, store forandringer i livet. Hensikt: Dette studiet undersøker hvor vidt en mobilapplikasjon kan være aktuell for å støtte ungdommer i en transisjonsprosess, og hvilke funksjoner som kan være viktig for å imøtekomme deres behov og styrke deres autonomi. Dette gjennomføres med unge, langtidssyke pasienter som deltakere i designprosessen. Metodologi: Dette studiet bygger på deltakende design, hvor det har blitt benyttet kvalitative metoder, og ulike verktøy for å komme opp med et designforslag i samarbeid med ungdomsrådet til Akershus Universitetssykehus. Resultat: Ved hjelp av workshops kom vi i samarbeid frem til et designforslag som har funksjoner som bygger på ungdommenes behov og ønsker. Funksjonene retter seg spesielt mot transisjonen, med utgangspunkt i å styrke ungdommene autonomi og selvstendighet. Konklusjon: En mobilapplikasjon viser seg å være et nyttig verktøy for å bistå ungdommer i transisjonsprosessen. Funksjonene som er implementer i designforslaget kan være med på å styrke ungdommenes autonomi. De er aktuelle for å gjøre transisjonsprosessen lettere og mer oversiktlig for ungdommene.
Design av personvernsinnstillinger for og med unge brukere av sosiale medier | Sylvia Saxlund (2014)
Master thesis. Department of Informatics, University of Oslo Abstract: Tenåringer er en neglisjert gruppe innenfor forskning. Det er få studier som involverer tenåringer, og enda færre med unge pasienter. De fleste studiene som finnes bruker tenåringer hovedsakelig som testere og informanter. Sosiale medier har ført til at vi i stadig økende grad deler til dels privat informasjon om oss selv på Internett. Unge mennesker er spesielt godt representert på ulike former for sosiale nettverk, det er bare et mindretall som ikke tar i bruk sosiale nettverkstjenester. Til tross for et økende fokus på personvern blir personvernsinnstillinger oppfattet som kronglete og kjedelig. Målsetningen med denne studien er å designe personvernsinnstillinger på en ny måte som appellerer i større grad til unge brukere av sosiale medier. Deltakende design og kvalitative metoder har blitt brukt for å involvere ungdom i designprosessen. Med ungdommer involvert ble det utviklet en rekke designforslag som senere ble evaluert av ungdommene og utviklet videre. Resultatene viser at det finnes en reel misnøye med hvordan personvernsinnstillinger fungerer på sosiale medier i dag. Ungdommer ønsker mer kontroll selv, samtidige som de vil at innstillingene skal være enkle å bruke. Bruk av farger for å visualisere personvern er en god idé, men farger har vist seg å ha ulik kontekstuell betydning for ungdommer. Å bruke konseptet ”cool” har hatt en positiv innvirkning på designforslagene med tanke på at sluttresultatet har fokus på mer kontroll og valgfrihet til brukere.
Design av personvernserklæringer for unge brukere av sosiale medier | Anja op ten Berg Simonsen (2014)
Master thesis. Department of Informatics, University of Oslo Abstract: Personvernserklæringer er lite tilgjengelige og inneholder svært mye informasjon skrevet på et avansert språk. Dette har resultert i at svært få tar seg bryet med å lese innholdet i dem. Brukere av nettjenester har ikke kontroll over hvordan egne personopplysninger behandles, og er avhengige av å sette seg inn i tjenestens personvernspraksis for å få oversikt over hva de samtykker til. Innholdet i slike erklæringer har vist seg å inneholde informasjon som gjør at personer mister kontrollen over eget personvern. Unge brukere av sosiale nettjenester er spesielt utsatt på grunn av stor deling av personlig informasjon, samtidig som de har manglende kunnskap og ofte er uvitende om hvilke konsekvenser dette kan medføre. Forskningen presentert i denne masteroppgaven går ut på å lage et konkret designforslag til hvordan personvernserklæringer kan gjøres mer tilgjengelige og attraktive for unge brukere av sosiale medier. Gjennom et samarbeid med åtte ungdommer hvor flere deltakende designaktiviteter har funnet sted, har det blitt utviklet et designforslag som viser en ny måte å presentere personvernserklæringer på. Resultater viser at overbevisende design som fokuser på å la brukere ta valg som hjelper dem i å forstå tjenesters personvernspraksis er avgjørende for å sikre et uttrykkelig og informert samtykke. Et krav om “tvunget” aktivt samtykke har vist seg å være nødvendig. I form av et lekent design har motivasjon og refleksjon hjulpet brukeren med å sette seg inn i den presenterte informasjonen. Den deltakende designprosessen har gitt ungdommene stor innvirkning på designet, slik at det i størst mulig grad skulle være tilpasset deres ønsker.