Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges

Abstract

BackgroundThe need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce.ObjectiveThe aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions.MethodsWe conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis.ResultsQuantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care.ConclusionsBased on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they exper...

How and how well have older people been engaged in healthcare intervention design, development or delivery using co‐methodologies: A scoping review with narrative summary

“…The majority of studies report external funding, but the value of this to C-MW per se is not specified. Reimbursement for participation is recorded by Giroux et al (2019) and adjustments to timescales by Ralston et al (2017) and Revenäs et al (2018). Only three studies explicitly report resource in terms of extra time being used to adapt to enable full engagement of a 'weak group' (Grönvall & Kyng, 2013), people with dementia (Revenäs et al, 2018) and the whole team (Ellins & Glasby, 2016).…”

“…Older participants designing a Parkinson's disease eHealth intervention suggested how future C-MW may be enhanced (Revenäs et al, 2018) and in the case of Schensul et al (2009) they envisaged ongoing engagement beyond the life of the project.…”

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“…Based on our findings, we have identified the characteristics of mHealth technology for PD that contribute to its socially acceptability [ Figure 2]. We propose inclusion of both the functional usability (technological dimension) and the social context of use (social dimension) by: (a) adopting a socio-technical perspective [47] and, (b) developing a participatory design or co-design approach [48,49].…”

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

“…The transferability of our results is inevitably limited by contextual factors of the overall study design, the participant constellation, and the Swedish health care system and standards of care. As has already been discussed elsewhere [ 28 ], the constellation of participants had several shortcomings: We failed in our attempt to involve informal caregivers; most of the participating PwP were highly educated and experienced (ie, expert patients); and there were existing professional or patient-provider relationships between some of the participants. This may have influenced the results to not fully reflect the needs of all stakeholder groups.…”

“…In the fourth workshop, the participants discussed their perceived usability and acceptance of the prototype and potential impacts. More details about the recruitment process, participants, and structure and content of the co-design workshops are described in [ 28 ]. The regional ethical committee approved the study (2015/2216-31/5).…”