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The 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.
The 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.
We 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.
Quantitative 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.
Based 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 experience the process and outcomes of co-design.
The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions [
Patient involvement in the improvement and development of health care services has been a key concept for many years. It has been suggested that health care services are necessarily coproduced by health care professionals and patients [
Challenges and benefits of user involvement in the development of eHealth services have been described previously [
The 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. The results of this study may support future research into the performance of co-design of eHealth services.
We conducted 4 half-day co-design workshops in May and June 2016 to explore co-care needs among people with Parkinson disease (PwP) and health care professionals. The first 3 workshops aimed at capturing needs and generating ideas for the design of an eHealth service (see
Mainly qualitative data, but also quantitative data, were collected during and after the workshops, reflecting participants’ and facilitators’ perceptions. This study is part of an action research project that involves multiple stakeholders (academia, health care organizations, and patient organizations) in designing, implementing, and developing models of co-care for people with chronic conditions. The regional ethical committee approved the study (2015/2216-31/5).
In this study, 7 PwP (
The chairperson of the regional patient association for Parkinson disease sent an email to all registered members with a brief description of the research project. In total, 32 interested members contacted the researchers for further information. The ability to communicate in Swedish and availability for participation in all 4 workshops were the main criteria for inclusion. Variation in age, gender, and years since diagnosis were also considered. Eight PwP met the inclusion criteria and were recruited. Of these,1 dropped out prior to the first workshop. The age of the 7 participating PwP ranged from 45 to 85 years (45, 56, 68, 73, 74, 74, and 85 years).
A neurologist who is a member of the research group sent an email invitation to 19 experienced health care professionals. We anticipated the recruitment of different health care professionals who are involved in the care of Parkinson disease, targeting primarily neurologists, nurses, physiotherapists, and counselors. In total, 11 health care professionals expressed interest and availability to participate and were recruited. Of these, 2 dropped out prior to workshop initiation. The age of the 9 participating health care professionals ranged from 32 to 63 years (32, 40, 45, 46, 47, 55, 58, 61, and 63 years).
Briefly, 2 professional moderators and 5 researchers with previous experience of doing co-design work in health care planned and carried out the workshops. The researchers collected data during the workshops and assisted the moderators—3 postdoctoral researchers (2 with degrees in health informatics and 1 in physiotherapy), 1 doctoral student in health care management research, and 1 research assistant (a medical doctor with a degree in public health and health informatics). The workshop facilitators collaborated with a developer who was prepared to participate in the workshops if necessary. However, collaboration between the workshop sessions was considered sufficient.
All workshops were carried out in university facilities. Food and drinks were provided for free. The participants did not receive any other reimbursement for their participation. Each workshop was introduced by one of the researchers who informed participants about the aim and structure of the day and summarized previous achievements. The overall goals of the co-design workshops were presented as follows to the participants: (1) to identify co-care needs; (2) to agree on what an eHealth service for co-care should contain and how it should be used; and (3) to collaboratively generate ideas for an eHealth service.
The content of individual workshops was decided through an iterative process between, during, and after workshops. The facilitators used the breaks between workshop sessions to discuss progress and to decide on possible deviations from the planned schedule. At the end of each workshop, the facilitators met for a debriefing session. The researchers also sent emails to the participants to summarize achievements after each workshop.
Characteristics and workshop attendance of people with Parkinson disease.
Identifier | Gender | Occupation | Education level | Years since diagnosis | Participation | ||||||||
Workshop 1 | Workshop 2 | Workshop 3 | Workshop 4 | ||||||||||
P1 | Female | Pension | University | >10 | Present | Present | Absent | Present | |||||
P2 | Female | Pension | University | 6-10 | Present | Present | Present | Absent | |||||
P3 | Female | Sick leave | University | >10 | Present | Present | Present | Absent | |||||
P4 | Female | Pension | University | >10 | Present | Present | Absent | Present | |||||
P5 | Male | Pension | PhD | 6-10 | Present | Present | Present | Present | |||||
P6 | Male | Pension | PhD | 1-5 | Present | Present | Present | Present | |||||
P7 | Male | Sick leave | High school | <1 | Present | Present | Present | Present |
Characteristics and workshop attendance of health care professionals.
Identifier | Gender | Profession | Neurology experience (years) | Participation | |||
Workshop 1 | Workshop 2 | Workshop 3 | Workshop 4 | ||||
H1 | Female | Nurse | >10 | Present | Present | Present | Present |
H2 | Female | Nurse | >10 | Present | Present | Present | Absent |
H3 | Female | Nurse | >10 | Present | Present | Present | Present |
H4 | Male | Physician | >10 | Present | Present | Present | Absent |
H5 | Male | Physician | >10 | Present | Absent | Absent | Absent |
H6 | Male | Physician | >10 | Absent | Absent | Present | Present |
H7 | Female | Physician | >10 | Absent | Absent | Present | Absent |
H8 | Female | Physiotherapist | >10 | Present | Present | Present | Present |
H9 | Male | Physiotherapist | 1-5 | Present | Absent | Absent | Absent |
Note cards reflecting participants’ ideas in the co-design sessions.
The workshops contained co-design sessions and focus group discussions. The co-design sessions were used to generate, collect, and discuss ideas based on the nominal group technique [
We used 3 different instruments to collect data on participants’ and facilitators’ overall experiences, perceived values, and challenges of the co-design workshops and their improvement suggestions.
Each individual workshop was formatively evaluated using 2 questions capturing perceived values, challenges, and improvement suggestions [
Throughout the co-design process, the researchers noted their reflections in a diary, in particular in connection with workshops and planning sessions. Unstructured diaries have been found to provide rich and in-depth data [
After the final workshop, a Web-based questionnaire was distributed to all participants to collect data on their general experience of the workshops and their views on collaboration, participant contribution, and logistics. Questionnaires are a cost- and time-efficient data collection tool that offers anonymity [
Descriptive statistics were used to summarize participants’ answers to 4 close-ended questions in the Web-based questionnaire, reporting percentages for the yes or no questions and the mean and range for ranking questions. Qualitative data were compiled into text documents and analyzed inductively according to principles of qualitative content analysis described elsewhere [
The results of quantitative analysis show that 75% (12/16) of the participants completed the questionnaire (6 of them after a reminder). All participant roles were represented—5 PwP, 3 nurses, 2 physiotherapists, and 2 physicians. The results indicated that the participants who completed the questionnaire had a positive experience regarding the co-design workshops (
Dataset for qualitative content analysis comprised 3 data sources as follows: (1) approximately 3000 words of diary notes from 3 researchers; (2) 165 formative workshop evaluation comments—75 of them from facilitators (based on workshops 1-4) and 92 from participants (based on workshops 1-3); and (3) 111 open-ended questionnaire responses from participants. Briefly, 6 categories and 30 subcategories that capture perceived values, challenges, and improvement suggestions were identified (
The participants were positive about the constellation of workshop participants, representing individuals with different backgrounds and competences. They particularly valued listening to other individuals’ perspectives and opinions about care and expressed that more diversity of experiences and expertise would have been beneficial. In particular, they desired the involvement of informal caregivers and representatives from additional care professions as well as a larger PwP group with more variation in the disease status. This is reflected in the following participant quotes:
A pity there wasn’t more disease variation in the participants with Parkinson disease.
Miss representatives from all care professions.
Results of 4 close-ended questions in the Web-based questionnaire.
Question | All participants |
PwPa |
Health care professional |
“What was your overall experience of participating in the workshop series?”b, mean (range) | 7.9 (7-9) | 7.8 (7-8) | 7.4 (6-9) |
“In your opinion, was the workshop content in line with the aim; to develop a co-care service?”c (yes), n (%) | 12 (100) | 5 (100) | 7 (100) |
“To what extent did you perceive that your voice was heard?”d, mean (range) | 4.3 (2-5) | 4 (3-5) | 4.4 (2-5) |
“In your opinion, was there was a balance between how much the participants with Parkinson disease and healthcare professionals voiced their thoughts?”c (yes), n (%) | 9 (75) | 5 (100) | 4 (57) |
aPwP: people with Parkinson disease.
bResponse scale: 1-10 (1=worst possible experience, 10=best possible experience).
cResponse scale: yes or no.
bResponse scale: 1-5 (1=Not at all, 5=Always).
Desire for more stakeholder variation (represented by participants only, P)
Good participant constellation (P)
Need for more diversity in expertise and experiences (P)
Need for several representatives of individual stakeholder groups (P)
Imbalance in the collaboration among multiple stakeholders with diverse backgrounds and expectations
Dynamic and pleasant discussion climate
Engaged and active participants
Differences in how much participants express their opinions
Stakeholders managed to make their voices heard
Communication difficulties due to differences in knowledge, roles, and expectations
Need to balance participant activity
Time investment and commitment paradox
Need for additional and longer workshops and more time for preparation
Time-consuming process (P)
Need to address patients’ health-related challenges
Challenging to achieve long-term commitment among participants and researchers
Need to communicate with participants before and between workshops (represented by facilitators only, F)
Desire for both flexibility and guidance from facilitators
Need for dynamic and flexible facilitation
Need for clearer roles and responsibilities among facilitators (F)
Need for adequate methods for data collection during the workshops (F)
Important to focus discussions using guidance
Important to have good time management
Provide clarity with appropriate tools and content
Important to prepare the workshop setting
Relevant workshop content, but concerns about goal achievement
General positive experiences
Interesting and educational (P)
Good to discuss reality and vision of care (P)
Fun and important to co-create (P)
Concern about workshop alignment (F)
Inconsistent goal achievement
Hopes and doubts about future care
Co-design creates hope for the future
Long way to usability (P)
Concern about health care’s readiness for co-care services
On the one hand, respondents perceived that the discussion climate was dynamic and pleasant and that the participants were engaged and had a high energy level. On the other hand, they perceived that there was an imbalance in participants’ influence. Care professionals were more active in expressing their opinions, sometimes on behalf of PwP. The respondents expressed communication difficulties related to differences in knowledge and expectations about care and the health care professionals’ use of specific language that was sometimes difficult to understand for PwP. Care professionals felt that they got too much attention, but as one of them commented, “Despite imbalance, the patient group was strong and dared to contribute” (q.82). The facilitators pointed out the importance of being aware of power relationships, managing participants who dominate, and enabling silent participants (mainly PwP representatives) to speak up. One of the facilitators commented that “it felt like more participants got the chance to speak during the focus groups, which resulted in a more nuanced understanding” (d.92). This was confirmed by the participants, who favored the focus group discussions, as illustrated in the following quote by a PwP: “Maybe better with more discussions in separate groups” (q.70).
The participants expressed a need for more time for the co-design process. They commented that more and, perhaps, longer workshops may have been beneficial. At the same time, the facilitators reflected that some of the sessions lasted too long for the participants to keep their concentration. Apart from sufficient time to collaborate in workshops, both participants and facilitators emphasized time for preparation. As a participant stated, “More time for preparation before the workshops enables us to contribute more” (wwdd.182). Meanwhile, the participants also expressed that the considerable investment of time that was required to engage in co-design was a major concern. Moreover, a care professional pointed out the need to consider health-related issues of PwP: "it would maybe have been better for patients to attend the workshops later during the day” (q.61). Facilitators noted that attendance was inconsistent for participants and for nonparticipant observers (ie, the researchers), and they reflected on how they could enhance the chances of keeping participants engaged, such as by socializing with them during breaks and maintaining contact between the workshops. Communication between workshops was appreciated by participants, as illustrated in the following quotes from health care professionals: “Useful informative mails” (q.96) and “Good to receive summaries between the workshops” (q.97).
The respondents appreciated that the moderator was dynamic and flexible and adjusted the workshop content and structure to meet participants’ needs. As one of the health care professionals commented, “We created a structure together” (q.15). While flexibility was necessary, the facilitators recognized the need for clear roles and responsibilities and well-functioning communication channels in the team, which would also facilitate data collection for the observers. The participants appreciated when discussions were guided by concrete questions, and they emphasized the need to allow sufficient time for discussions. As one of them suggested, “Limit the scope of the tasks more in the workshops” (wwdd.179). The facilitators’ reflections indicate that they sometimes struggled with the selection of appropriate co-design methods that would support the design of an eHealth service. The participants appreciated working with note cards as they perceived that these provided a good overview of what was discussed. Furthermore, one of the facilitators reflected that “the prototype was probably key in clarifying the co-care concept” (d.103). The choice of workshop setting, characterized by sufficient space, ventilated rooms, and well-functioning technical equipment, was considered important to provide good conditions for the co-design process.
The respondents shared positive experiences about the overall workshop performance, preparations, flow, logistics, structure, and teamwork. The participants perceived that the workshop content was interesting and educational, particularly when discussing the reality, expectations, and vision of care. As a participant commented, “I have a better understanding now. The workshops have helped me to reflect on the health care system in a new way” (wwdd.138). Co-design was perceived as fun and important, and one of the health care professionals noted that “It is important to develop the co-care service together to increase the chance of future use” (q.31). On the other hand, the respondents expressed concern about goal achievement, and the facilitators were concerned about succeeding in workshop alignment and ensuring progression. One of the facilitators reflected after the second workshop, “There is some concern among both the project team and participants about where we are headed” (d.42).
The respondents perceived that co-design creates hope for future care. For example, one of the participants commented on the result of the co-design workshops (ie, the eHealth prototype): “the content is promising and has potential to improve follow-up [as in continuity] of care” (wwdd.79). Nevertheless, they also realized that there is a long way to go before actual use. As one of the PwP expressed, “We took the first steps, but we have a long way to go” (q.67). The participants voiced concerns about health care’s readiness for co-care services, and one of the PwP highlighted that it is “important to engage health care” (q.106). Their concerns were that administration of a new eHealth service would take too much time and cause stress for personnel or reduce the time available for patient encounters.
This study explored different stakeholders’ (PwP, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care of Parkinson disease, with a particular focus on their perceptions of the values and challenges of co-design as well as improvement suggestions. The participants had an overall positive experience of the co-design workshops. The values and challenges were identified across 6 different domains, covering, multistakeholder involvement and collaboration, time investment and commitment, flexibility and guidance from facilitators, goal achievement, and reflections on future care. A deeper analysis of the results revealed paradoxical patterns in some of the experiences, namely the following: (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. These paradoxes are further discussed below.
The selection and recruitment of participants for the co-design workshops was a challenge because we aimed to involve diverse stakeholders, while maintaining a sensibly sized co-design group for optimal collaboration. Pearce et al describe 4 phases of user involvement:
While the participants’ questionnaire ratings in this study indicate that they experienced their voices being heard to a high extent and that participants’ activities were balanced, the qualitative analysis, nevertheless, indicates that health care professionals experienced that they talked too much and even spoke on behalf of PwP. This may be explained by inherent asymmetric power relationships between patients and health care professionals. The power of health care professionals has been suggested to be activated in the interaction with patients [
A challenge experienced by the facilitators concerned the planning of co-design workshops to enable participants to engage in and commit to the entire co-design process, addressing the engagement and retaining phases of participant involvement [
The participants in our project raised concerns about the long way yet to go before a usable product is ready and doubts about health cares’ readiness for co-care. Previous research reports the positive impact of user involvement on system success [
The main strength of this study was the triangulation of multiple data sources collected at different timepoints to capture participants’ and facilitators’ experiences and perceptions during the co-design process. However, the data collection instruments were limited in their ability to collect in-depth data. Maybe some of the identified values and challenges were induced by the questionnaire and would not have been equally prominent if we had given the participants the opportunity to reflect more openly, such as in an interview or focus group discussion. In contrast, the diary notes from the researchers contained more in-depth reflections. Quantitative results from the questionnaire need to be interpreted with caution as the number of participants was limited and as the questionnaire was not based on previously validated items. Furthermore, variation in the degree of workshop attendance among participants may have influenced their responses.
The participation of 4 nonparticipant observers in each workshop, 1 in each corner of the room, allowed the researchers to observe group dynamics, which was important in the analysis process, even though observation notes were not included in the unit of analysis. The number of observers needs to be balanced with the risk that observation may influence participants, such as by leading them toward introspection or even questioning their own behavior [
The transferability of our findings is largely dependent on the context and how co-design is applied in the service development. There is no one-size-fits-all model [
Our findings concerning participants’ and facilitators’ experiences of co-design are paradoxical in many ways. To generate value from co-design, the choice of methods needs to be well adjusted to the stakeholder group and to the context, which will influence how participants experience the process and outcome. Importantly, co-design is only a phase in the cocreation and coproduction of better health care, and its potential can only be realized if the generated ideas are implemented in practice. Hence, the co-design process should involve a plan for the continued engagement of stakeholders throughout the implementation process. The findings from our co-design workshops support a general need for co-care services. However, we conclude that co-design is not mainly about creating new services, but it is about improving current practices to shape better care.
Aims and main results of each of the 4 workshops performed during the co-design process.
Focus group discussion guides used in workshops 3 and 4.
The Web-based questionnaire sent out to participants after the final co-design workshop.
Data abstraction examples.
electronic health
people with Parkinson disease
The authors thank all co-design participants for their valuable time and contributions and the following people for their support in different phases of the research: Elena Eftimovska, Per Svenningsson, Sara Riggare, Eleonor Högström, Oscar Frykholm, Sara Tolf, and Sara Riggare; thanks to Anna Essén and the 4 reviewers for reading our manuscript and providing valuable feedback. The research described in this paper was funded by the Swedish Research Council and the Swedish Research Council for Health, Working Life and Welfare (Grant # 2014-4238).
None declared.