Case-study 1 Addressing the problem of rural community engagement in healthcare service design (Nimegeer et al., 2011).

 

A method where a ‘game simulation’ was carried out to engage four different communities and healthcare workers, to discuss and negotiate HC service needs in rural Scotland. The senior citizens (end-users) were resistant towards the reconfiguration of HC services based on quantitative data which aroused disagreements between stakeholders.

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The game established a playful and transparent platform to articulate community priorities, based on their experiences of using HC services. It allowed the community members and service managers to push their service needs to the National Health Service budget, identifying appropriate and affordable implementation of safe local services.

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Through this, multi-stakeholder engagements emphasized the diverse needs of each community. “Game” as an engagement tool provided a positive and empathetic space for exchange between opposing groups, leading to innovative service models that met current and future needs.

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Case-study 2 Rethinking how healthcare is conceptualised and delivered through speculative design in the UK and Malaysia: A Comparative study (Tsekleves et al., 2019).

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This method involved a participatory speculative design workshop, keeping health and wellbeing of vulnerable groups as the core discussion in Malaysia. The speculative-PD workshop facilitated a unique collaborative space for the participants (senior citizens and experts) to exchange ideas regarding healthcare and their future. Participants co-created speculative concepts, narrated through ‘Design Fiction’ approach that made the ideas relatable and provocative, resulting in further debate on (un)preferred futures.

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While being such an uncommon and new approach amidst a non-western context, its facilitation of socio-cultural contextualisation exhibited the prioritization of ideas centered around community over individual needs. Participatory speculative design as an approach could potentially unlock new perspectives, enabling citizens, experts, and researchers in developing countries to build upon people-centered services around health and aging.

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Case-study 3 Participatory Design with Marginalized People in Developing Countries: Challenges and Opportunities Experienced in a Field Study in Cambodia (Hussain et al., 2012).

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This PD project focuses on developing a device that makes walking through mud easier for children with prosthetics in rural Cambodia. The children living in different villages made participation difficult for user-led interventions. Even accessing adult participants was difficult due to social structures and work schedules. Additional barriers included language, socio-religious construct, cultural biases towards foreign designers, and time (in poorer countries every individual is a resource to the family on a daily basis).

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The three years long PD processes thus needed more flexibility where designers led the process while mobilizing participation by empowering participants (prosthetists, mechanical engineer students and children using prosthetic legs) for research and co-creation. The prosthetists were trained by NGOs and were highly aware of user needs, technical resources, and economic restrictions. Yet, they did not have the organizational power to suggest new products. Here, workshopping opened an opportunity to build social capacity and enhance their abilities by educating them with necessary design skills. These would allow them to collaborate with communities, design solutions and prototype new products for people with disabilities in the future.

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Opportunities and Challenges

The case-studies above adopted PD methods to integrate stakeholders into interventions. While the first two case studies were more organised, the third did not have a linear process. It established that the PD approach has the potential to not only mobilise a community but also bring constructive solutions. However, PD should not be stereotyped as a democratic, unbiased and easy integration of people’s participation. Harrington et al. (2019) argue that PD as a form of design workshop is a privileged, white, youthful and upper to middle-class approach. It might be frustrating and exclusionary to marginalised communities who may not have had exposure to higher education and creative thinking. Therefore, there is scope for PD to modify its approach based on the context while not underestimating the participants as resources. In under-developed countries, PD needs to go deeper by building on community relationships and trust to conduct a successful intervention (Hussain et al., 2012).

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While co-design is an effective component of health service planning as it brings the stakeholders as participants and the key determinant of the outcomes are dependent on the wider contexts in which it occurs, the question remains- to what degree does it enable broader service offerings? (Rendalls et al., 2019). Thus, it is important to investigate how PD can foster relevant processes to achieve community-centered HC services.

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Inter-dependability of different approaches

PD and Community Based Participatory Research (CBPR) both originated from Action Research where the methodologies leverage on participant's perspectives. CBPR allows stakeholders to be part of the research process for better clarity of problem statement: with the Photovoice method, for example, participants are encouraged to visually document their research. PD is a more solution-driven approach used when the problem area is already defined. Collaboration of CBPR and PD starts with allowing users to participate in the research process with photovoice that could direct a more authentic investigation - integrating the findings into the decision-making process and reconfiguring inter-community power dynamics. It aids identification of resources within the community for data collection and capacity building to address the problem (Racadio et al., 2014).

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On the other hand, SD has already adopted co-design as a participatory approach, along with its existing tools such as mapping multi-layered interactions, touchpoints, journey-mapping and additional skills of understanding business and management as ways to push the proposals to the public sector for adoption and implementation (Saad-Sulonen et al., 2020). Hence it can be said that bringing the perspective from CBPR into PD and PD into SD can potentially make community mobilisation more rooted and contextual, especially in addressing HC service delivery. “Participation in a design process doesn’t depend necessarily on the set of methods used, but on the actual redistribution of power happening in the design decision process” (Sangiorgi, 2011).

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Discussion

This essay posits that the points below are the values PD can add to HC services and its experiences. Additionally, they can inspire SD’s design process and implementation to be more authentic and grounded especially when working with weaker sections of the society. Nonetheless, communities and HC systems are both complex ecosystems - even with similar communities, the requirements could be different. Therefore, it is important to know the end-users’ needs thoroughly and make services based on that. To achieve that, it is important to penetrate into their lives, systems and begin from their experiences.

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Service customization

In Co-design sessions, participants can engage as experts of their own experiences while acknowledging other stakeholders’ perspectives; leading to richer insights and context-appropriate interventions, especially in HC services (Langley et al., 2020). Prototypes derived from PD add meaningful perspectives into the existing systems, additionally sparking new patient-centered services (Vaajakallio et al., 2013). Case-study 1 showed that despite having similarities in the community groups, the PD workshops led to different SD solutions. For example, the communities believed they needed services for treating cancer, after-hour calls for emergency and alcohol abuse. However, the data from the PD activity showed that they needed a local GP instead. As a result, the diverse outcomes explained the importance of local contextual factors, aspirations, health priorities and budget to be considered while designing new service models. Hence, it can be said that community participation enables customization of HC services.

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Psychological empowerment

Bowen et al. (2010) describe that Experience Based Design allowed actors to share their lived experiences about their service encounters and designers to evaluate the spectrum of challenges. “…sharing of stories and emotional maps helped to build trust and create alliances for change between patients and staff” (Bowen et al., 2013). However, quite often it is seen that designers collaborate with majority groups to avoid challenges of linguistic differences and later adapt the solutions for minority groups. It might take time for them to learn to articulate, but with the help of interpreters or by making communications more visual (Yokota, 2019), if minority people are involved in dialogue, it can foster psychological empowerment among participants (Hussain et al., 2012). It boosts confidence in their abilities by participating in developing solutions that help themselves and others through honing their critical awareness towards the needs in a particular context. Making co-design activities more inclusive will result in more resilient and meaningful solutions while avoiding unconscious bias (Yokota, 2019).

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Community as resource

As discussed through case-study 3, the PD approach in developing countries could be led by the external designers in the early phases of a project. This is an opportunity for the designers to take necessary steps to successfully penetrate into the community, identify potential collaborators and train them to build social capacity. Participation allows researchers to not only gather data on community behaviours and beliefs but also investigate the socio-economic and political context over time (Rifkin, 2014). Thus, allowing a holistic analysis of a specific situation by empowering communities, building local capacity and driving sustainable changes.

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Researchers also believe that citizens who are already working towards building social inclusion for hard-to-reach people are potential collaborators for fostering accessible HC services. They are often referred to as community-connectors who could potentially play the role of a bridge between the HC service providers and the communities (Wallace et al., 2020). If they are empowered with the necessary tools, it could benefit both, the community and service providers to investigate the needs and provide solutions. As suggested by Nimegeer et al. (2011) "Engaging community members as intelligent, equal partners who can deal with complex financial, health and service information is an educational and analytical process that can make community member partners in change". If more time is spent understanding the background of the participants, listening carefully and fostering mutual trust, it can result in building stronger connections between stakeholders- thus cultivating a sense of ownership towards the services.

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Conclusion

Stating from personal experience in India, where HC systems are more top-down and not patient-centered, unavailability of the appropriate services based on local context is quite a common scenario. A combination of CBPR, PD, and SD can empower communities as well as HC stakeholders to identify gaps and impact the landscape of HC services positively, especially in semi-urban and rural set-ups.

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A collaborative framework derived from CBPR, PD and SD can help in giving a voice to the communities in need while making HC services more accessible, customized and contextually sustainable. However, PD must constantly evolve to make itself more flexible, versatile, respectful and try different tools to help people express, take ownership and be part of the change.