JMIR Publications

ABSTRACT

Background:

In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for pre-visit preparation could enhance time efficiency and guide the conversation during the visit towards the patient’s priorities.

Objective:

The aims are to demonstrate the contribution of a participatory approach to developing digital solutions and to detail a potential development process, using stroke as a case study.

Methods:

The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-stroke checklist and existing research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the framework method.

Results:

The development process included 22 participants (9 women) with a median age of 59 (range 42–83) years and a median of 51 (range 4–228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn re-configured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested space for free text. Third, capturing needs and value of the tool highlighted the tool’s potential to identify health problems and the importance of encouraging further dialogue. Each theme included subthemes. The resulting digital tool, Strokehälsa™ version 1.0, is now incorporated into a national health platform.

Conclusions:

The participatory approach to tool development yielded a pre-visit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions. The tool is freely shared for adaptation and improvement in different contexts. Clinical Trial: Research web org/FOU: 275135