A new framework for utilising participatory methods

According to the World Health Organization (WHO, 2025), non-communicable chronic diseases (NCDs) account for approximately 80% of deaths worldwide. Most of these diseases share common, predisposing risk factors, such as obesity and low physical fitness, often stemming from unhealthy lifestyles (including insufficient physical activity, poor nutrition and sleep). While treatment has improved, primary prevention strategies targeting healthy individuals, especially in childhood and adolescence, could be the most effective solution. Despite this, existing risk calculation tools are primarily designed for adults, and there is a need for more accurate, youth-focused tools to fight back against NCDs. New methods for developing effective and personalised health promotion interventions are required.

To ensure that these interventions truly cater to their intended audience, the end-users are recommended to be included in the design process as much as possible. In order to allow for the complex nature of having multiple stakeholders in culturally different areas, a novel framework for co-design was developed. The aim of this project is to develop an AI powered tool which includes a web app for healthcare practitioners (HCP) and a mobile app for parents with young children (families) and adolescents. These tools provide personalised risk-lowering strategies and promote healthy living.

HCPs, adolescents and families were involved in the project through methods inspired by Participatory Action Research – a collaborative, iterative methodology that treats stakeholders as co-researchers. The stakeholders were invited to co-design the two applications which are meant to work in unison by synchronizing the data from the mobile app with the HCP’s web dashboard. This enables the HCP to monitor risk profiles and provide tailored guidance.

Participatory Action Research (PAR) is a research approach that often prioritises the expertise of those directly affected by the issue (Cornish et al., 2023). In youth studies, PAR has been used to empower young people to influence matters affecting them. Moreover, in healthcare research, it has served as a tool for reflection and improvement of practices (Cornish et al., 2023). PAR aims to create change – not just in knowledge, but also in practices that improve the lives of people and communities (Anyon et al., 2018).

Participatory methods are distinguished from participatory research by involving participants primarily as data sources through structured engagement activities. In contrast, participatory research treats participants as equal agents who share decision-making authority over the research questions, design, and interpretation of findings (Montreuil et al., 2021). Various terms have been used to refer to these approaches (e.g. co-creation, co-design, co-production, citizen science) with some diversity in definitions.

Involving HCPs, families and adolescents throughout the process ensures interventions are co-designed by those who deliver, receive and engage with the apps. As there was no applicable existing framework for a project that crosses over disciplines, countries and stakeholders, a novel framework was used (Dictus et al., 2023) (see Figure 1). The SmartCHANGE approach uses participatory methods rather than research, since the formation of the research questions and interpretation of the findings was mostly done by the facilitators and designers.

SmartCHANGE Participatory Research Framework

A detailed protocol was made to aid in the co-design process in different study sites in Finland, the Netherlands, Slovenia and Portugal (Dictus et al., 2023). It was designed to be explicit enough to align researchers’ understanding of the goals and expectations, but broad and flexible enough to allow adjustment to their specific context.

In Finland, the co-design process included two study arms: one for school nurses, and the other for pupils in lower secondary school (aged 14). Co-design with adolescents also took place in the Netherlands, and the participants from both countries got to evaluate each other’s work in later stages. The other countries worked with HCPs and families.

The framework is divided into 4 phases, the first of which spans across the other phases by laying the groundwork for collaboration. The ‘diverge’ and ‘converge’ paths surrounding the diamond shaped phases illustrate the approach that to fully understand the issue at hand, it is first needed to expand one’s view to explore and consider all the factors that might be important to paint a full picture. Only after this can one converge, start to prioritize and narrow the focus to a point that can be addressed in the next phase. This process is also seen as iterative and non-linear, which means that some steps are overlapping with each other, and insights from other steps often feed into earlier phases as new ideas emerge.

Phase 1 – Build partnership

As participatory methods are based on the interaction between participants, establishing trust and securing everyone’s commitment to the process is essential (Cornish et al., 2023). Phase 1 of the SmartCHANGE framework is focused on building relationships across the timeline of the project. Juujärvi and Lund (2020) emphasize that successful participatory projects depend on identifying and valuing stakeholders’ local expertise and lived experiences. In this phase, diverse perspectives and needs are mapped, and expectations are aligned, for instance regarding time investment and future interaction.

HCPs’ activities regarding the partnership phase included setting team agreements, reflecting one’s own strengths as a professional, presenting and discussing the SmartCHANGE project and AI. For adolescents, additional workshops – for example on research methods – were recommended to support their participation as co-researchers. This phase proved particularly important and time-consuming, as adolescents can be shy and nervous to share their opinions in an unfamiliar environment.

Phase 2 – Explore

The Explore phase dives into the needs of the stakeholders by understanding the context they operate in. The aim is to surface key motivations, daily routines and pain points that influence health behaviour or the practical work of the school nurses. This includes various art-based methods such as collage and drawing, and for instance peer interviews by adolescents. For example, both the adolescents and school nurses participated in a Photovoice activity, in which the participants used photography to document and discuss their lived experiences. The school nurses were instructed to capture the pain points of their work (see Picture 1), and the adolescents to capture aspects of life that either promoted health or weakened it. Activities such as this one activate participants and empower them to share their opinions, even if wording the issue would otherwise be difficult.

Examples of image-based discussions in Finland

Example 1

Example 2

Phase 3 – Define

The third phase aims to define the problem and its key factors and challenges by co-creating an operational definition for the problem in health behaviour and focusing on the stakeholder’s view on the matter. Fostering ownership and creating space for experiential knowledge, exploration of the determinants of health as well as challenges and facilitators were prioritized. The adolescents had a persona creation activity, where they depicted what an average day in the life of a teenager would be and came up with (health) problems that they might have. HCPs also performed this exercise for a typical school nurse and their day. In addition, to define the behavioural challenge, facilitators created cards with challenges identified in previous sessions for the HCPs. Participants were asked to either select a particular challenge or summarize a set of challenges to define what they consider to be the most significant problem among adolescents. After that, HCPs pitched their final problem statements and reached a consensus by merging problem statements and through voting. The final problem they chose through this activity was related to mood disorders and psychological distress as a key problem area among adolescents.

A problem that emerged among Finnish adolescents: “Social media makes me anxious”

• The solutions proposed to address the problem:
  • Leave your phone somewhere else and do something without it
  • Put “do not disturb” mode on
  • Hide your phone
  • Reduce your use of social media
  • Put a screen time on addictive apps and don’t disturb mode on so you don’t see if a message or snap comes in
  • Set tougher rules with your parents about how you use your phone and, for example, which apps you download
  • Throw the phone at the wall

Phase 4 – Generate and Improve

Phase 4 builds upon the key issues identified in phase 3 by focusing on coming up with a solution to the defined problem. This is a very practical phase, where the participants translate their ideas into real prototypes for the apps. It is important to recognize that the phases are not mutually exclusive: this work is iterative, with problem definition and solution creation going hand in hand – and sometimes in reverse.

In Finland, the adolescents participated in a type of “Shark Tank” activity, where they came up with their own app ideas and pitched them to the other groups. They then got to invest in each other’s ideas, and the most popular app idea was rewarded. The prototypes that the Finnish and Dutch adolescents made, were then refined into one interactive prototype which they got to try out and give feedback on. Finally, the final product – the HappyPlant app – was given to the adolescent for review. The adolescents reflected on their involvement in the process and stated that the developers had taken their ideas and suggestions into account well.

What did we learn?

Participatory methods ensure that interventions are truly inspired by the user’s own ideas and real-world experiences. Contextual factors play a significant role in shaping the adolescents’ concerns and interests. The differences between Finnish and Dutch adolescents were an interesting part of our research. For example, in Finland, the themes of cold weather and ice were predictably prominent, and the topic of nature was mentioned more. Additionally, energy drinks came up as a unique topic, as in Finland, these drinks are restricted for those under 15 years of age, unlike in the Netherlands. This likely influenced their visibility in discussions around health. The Dutch adolescents focused more on stress and mentioned phones as addictive and saw body weight as a more important aspect of health than the Finnish adolescents did.

The motivations also differed between the countries. Some Finnish teens valued privacy, while others some social interaction, however in the Netherlands there was a clear difference in that there was more emphasis on competition with peers and they were more open to sharing some information with others. In both countries, however, adolescents weren’t willing to share information with parents or HCPs. In both countries, sleep and mental health were seen as more important than physical activity in regard to overall health.

Reflecting on the process, a few areas for improvement became clear. Time constraints posed a significant challenge: strict deadlines created a lot of pressure and limited the application of the co-design process. The HCPs in both countries responded positively to the participatory approach. They seemed to enjoy the opportunity to engage in creative reflection and exchanging ideas with peers. However, the HCPs had had less flexibility in shaping the web application, resulting in only partial incorporation of their ideas into the final product. It’s also important to recognize that adolescence is a particularly complex period for research participation. Many of the participants were shy and did not want to work in big groups and weren’t always motivated to voice their opinions. This was a consistent challenge in both countries. Working in an environment other than school helped adolescents to be more relaxed and share their own opinions. Ultimately, many of the practical solutions proposed by adolescents were incorporated into the final app, which indicates that the co-design process was, to a considerable extent, successful.

Next steps

The next phase of the SmartCHANGE project involves evaluating the feasibility, usability, and explainability of the co-designed tools in real-world health care contexts in five study sites, in Finland, the Netherlands, Slovenia, Portugal and Taiwan. A non-randomised trial design with a control group will be implemented during 2025-2026. Every study site will recruit 100 children or adolescents (50 in the intervention group and 50 in the control group). Additionally, the study will generate preliminary evidence on the efficacy of the SmartCHANGE tools in preventing cardiovascular and metabolic diseases.