Enabling the Participation of People with Parkinson's and their Caregivers in Co-Inquiry around Collectivist Health Technologies

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in 'Parkinson's Radio' -- a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research.

[1]  M. Kyng,et al.  Computers and Democracy: A Scandinavian Challenge , 1987 .

[2]  Matthew A. Menza,et al.  Parkinson's disease and anxiety: Comorbidity with depression , 1993, Biological Psychiatry.

[3]  Susanne Bødker,et al.  Creating Conditions for Participation: Conflicts and Resources in Systems Development , 1996, Hum. Comput. Interact..

[4]  Steve Howard,et al.  Methods & tools: the rich picture: a tool for reasoning about work context , 1998, INTR.

[5]  Jean Hartley,et al.  Co-research: A new methodology for new times , 2000 .

[6]  Andrew Keen,et al.  The Internet Is Not the Answer , 2001 .

[7]  B. Israel,et al.  Community-based participatory research: policy recommendations for promoting a partnership approach in health research. , 2001, Education for health.

[8]  Kevin B. Wright,et al.  Health-related Support Groups on the Internet: Linking Empirical Findings to Social Support and Computer-mediated Communication Theory , 2003, Journal of health psychology.

[9]  C. Cassell,et al.  Essential guide to qualitative methods in organizational research , 2004 .

[10]  Jean Hartley,et al.  Co-research: insider/outsider teams for organizational research , 2004 .

[11]  B. Israel,et al.  Methods in Community-Based Participatory Research for Health , 2005 .

[12]  Laurent Gerbaud,et al.  Impact of the motor complications of Parkinson's disease on the quality of life , 2005, Movement disorders : official journal of the Movement Disorder Society.

[13]  Trevor Crawford,et al.  Social support and psychological outcome in people with Parkinson's disease: Evidence for a specific pattern of associations. , 2006, The British journal of clinical psychology.

[14]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[15]  Pieter Jan Stappers,et al.  Co-creation and the new landscapes of design , 2008 .

[16]  N. Wallerstein,et al.  Community-based participatory research for health : from process to outcomes , 2008 .

[17]  J. Jankovic Parkinson’s disease: clinical features and diagnosis , 2008, Journal of Neurology, Neurosurgery, and Psychiatry.

[18]  C. Warren Olanow,et al.  The scientific and clinical basis for the treatment of Parkinson disease (2009) , 2009, Neurology.

[19]  Jeffrey M. Hausdorff,et al.  Wearable Assistant for Parkinson’s Disease Patients With the Freezing of Gait Symptom , 2010, IEEE Transactions on Information Technology in Biomedicine.

[20]  Peter Gregor,et al.  User-Sensitive Inclusive Design , 2011, Universal Access in the Information Society.

[21]  Stephen Lindsay,et al.  Cueing for drooling in Parkinson's disease , 2011, CHI.

[22]  Gillian R. Hayes The relationship of action research to human-computer interaction , 2011, TCHI.

[23]  Marc Herrlich,et al.  WuppDi! - Supporting Physiotherapy of Parkinson's Disease Patients via Motion-based Gaming , 2011, Mensch & Computer.

[24]  Christopher A. Le Dantec,et al.  Participation and publics: supporting community engagement , 2012, CHI.

[25]  P. Olivier,et al.  Empathy, participatory design and people with dementia , 2012, CHI.

[26]  Nick Miller,et al.  Speech, voice and language in Parkinson’s disease: changes and interventions , 2012 .

[27]  Denise Tanner,et al.  Co-research with older people with dementia: Experience and reflections , 2012, Journal of mental health.

[28]  Gunnar Ellingsen,et al.  A Review of 25 Years of CSCW Research in Healthcare: Contributions, Challenges and Future Agendas , 2012, Computer Supported Cooperative Work (CSCW).

[29]  Patrick Olivier,et al.  Enabling self, intimacy and a sense of home in dementia: an enquiry into design in a hospital setting , 2012, CHI.

[30]  Patrick Olivier,et al.  Cheque mates: participatory design of digital payments with eighty somethings , 2012, CHI.

[31]  Karin Slegers,et al.  Active collaboration in healthcare design: participatory design to develop a dementia care app , 2013, CHI Extended Abstracts.

[32]  Patrick Olivier,et al.  Design to promote mindfulness practice and sense of self for vulnerable women in secure hospital services , 2013, CHI.

[33]  Laura Rocchi,et al.  Wearable audio-feedback system for gait rehabilitation in subjects with Parkinson's disease , 2013, UbiComp.

[34]  Patrick Olivier,et al.  Configuring participation: on how we involve people in design , 2013, CHI.

[35]  Ana Correia de Barros,et al.  User-centred design of a mobile self-management solution for Parkinson's disease , 2013, MUM.

[36]  Evgeny V. Morozov,et al.  To Save Everything, Click Here: Technology, Solutionism and the Urge to Fix Problems that Don't Exist by E. Morozov, ed., , 2013, Inf. Polity.

[37]  Vasillis Vlachokyriakos,et al.  Designing voting technology for participation , 2013, DG.O.

[38]  Larry Stillman,et al.  Participatory action research & inclusive information and knowledge management for empowerment , 2013, ICTD.

[39]  Beth E. Kolko,et al.  Research at the margin: participatory design and community based participatory research , 2014, PDC '14.

[40]  Andrea G. Parker,et al.  Collectivistic health promotion tools: Accounting for the relationship between culture, food and nutrition , 2014, Int. J. Hum. Comput. Stud..

[41]  Patrick Olivier,et al.  A pool of dreams: facebook, politics and the emergence of a social movement , 2014, CHI.

[42]  Sinziana Mazilu,et al.  GaitAssist: a daily-life support and training system for parkinson's disease patients with freezing of gait , 2014, CHI.

[43]  Patrick Olivier,et al.  Exploring the acceptability of google glass as an everyday assistive device for people with parkinson's , 2014, CHI.

[44]  Amr Ahmed,et al.  Keep, lose, change: Prompts for the re-design of product concepts in a focus group setting , 2014 .

[45]  Zubin Shroff,et al.  Participatory action research in health systems : a methods reader , 2014 .

[46]  Patrick Olivier,et al.  LApp: A Speech Loudness Application for People with Parkinson's on Google Glass , 2015, CHI.

[47]  Geraldine Fitzpatrick,et al.  Self-Care Technologies and Collaboration , 2015, Int. J. Hum. Comput. Interact..

[48]  Daniel Jackson,et al.  Designing for and with People with Parkinson's: A Focus on Exergaming , 2015, CHI.

[49]  Patrick Olivier,et al.  Beyond Participatory Production: Digitally Supporting Grassroots Documentary , 2015, CHI.

[50]  Shaowen Bardzell,et al.  Reconstituting the Utopian Vision of Making: HCI After Technosolutionism , 2016, CHI.

[51]  Josephine Ocloo,et al.  From tokenism to empowerment: progressing patient and public involvement in healthcare improvement , 2016, BMJ Quality & Safety.

[52]  Myriam Lewkowicz,et al.  "Counting on the Group": Reconciling Online and Offline Social Support among Older Informal Caregivers , 2016, CHI.

[53]  Jude Mukundane,et al.  RootIO: ICT + telephony for grassroots radio , 2016, 2016 IST-Africa Week Conference.

[54]  Tom Jenkins,et al.  Designing Speculative Civics , 2016, CHI.

[55]  Patrick Olivier,et al.  Digital Civics: Citizen Empowerment With and Through Technology , 2016, CHI Extended Abstracts.

[56]  Patrick Olivier,et al.  A Real-Time IVR Platform for Community Radio , 2016, CHI.

[57]  Patrick Olivier,et al.  Speeching: Mobile Crowdsourced Speech Assessment to Support Self-Monitoring and Management for People with Parkinson's , 2016, CHI.

[58]  Alex S. Taylor,et al.  Re-Making Places: HCI, 'Community Building' and Change , 2016, CHI.

[59]  Patrick Olivier,et al.  Implications of Synchronous IVR Radio on Syrian Refugee Health and Community Dynamics , 2017, C&T.

[60]  Malay Bhattacharyya,et al.  A Probabilistic Approach to Group Decision Making , 2017, CHI Extended Abstracts.

[61]  Patrick Olivier,et al.  Our Year With the Glass: Expectations, Letdowns and Ethical Dilemmas of Technology Trials With Vulnerable People , 2017, Interact. Comput..

[62]  Jonathan Hook,et al.  Enabling Polyvocality in Interactive Documentaries through "Structural Participation" , 2017, CHI.

[63]  T. Pyrch,et al.  Participatory action research in health systems: a methods reader , 2018 .