This report has emphasised the importance of stakeholder involvement when designing the elements of a Learning Health System. It has described how the stakeholders are critical to understanding the true complexity of what may superficially look like a technical undertaking. This process has been called many things – co-design, co-production, co-creation, patient-centred design, patient engagement and more. All of these differ in subtle but important ways. This report is not concerned with these distinctions, but simply that those developing Learning Health Systems find an approach that meets their needs.
Design is a creative process to solve complex problems [161]; user-centred design brings stakeholders into the process. ISO 9241-210 is the international standard in Human-centred Design for Interactive Systems [162]. NHS Digital has created a set of NHS Design Principles based on this standard [163]. They can be usefully applied when developing each element of a Learning Health System.
The co-design approach emerged as a way of engaging representatives of stakeholders in the system development lifecycle. This emphasises the realisation of ideas that work in reality [164, 165], as well as the application of knowledge and the production of prototypes [38, 94]. The history of these developments has been traced from Hippocrates to the Learning Health System [166]. Involving potential users in participatory co-design aims to sustain their contribution to ongoing improvements [164]. A set of core principles has been suggested [167]:
- Democracy: Include representatives of all stakeholders who will be affected by the new system. The aim is to increase diversity of experience, values and knowledge, while fostering trust among those involved. Careful attention should be paid to ensure that the participants are representative of the full range of stakeholders.
- Mutual Learning: Participants will learn from each other and from themselves as they reflect on the work. Efforts must be made to ensure that all participants are able to engage.
- Capture Tacit or Latent Knowledge: Assess the needs of stakeholders, including those that are not easily observable. Tacit needs are conscious but not expressed, while latent needs are subconscious and cannot be expressed in words.
- Collective Creativity: Stakeholders can work together creatively in a way that encourages the development of values and embeds them in the product. Certain tools and facilitation techniques may stimulate creativity more than others.
Participatory co-design offers a reliable, responsible and ethical approach to the development of Learning Health Systems. However, because it can seem resource-intensive, it is sometimes neglected by developers who fail to grasp the true complexity of a project.
A workshop was held in collaboration with Open Lab – Newcastle University [29] to explore how co-design and participatory design approaches could be applied within a Learning Health System. It brought together a group of 20 Learning Health System experts, clinicians, patients, technology providers and software design researchers.
The workshop featured extensive group collaboration on a range of design-based research methods, tools, and techniques, and followed a design thinking process [168]. It was held online due to the Covid-19 outbreak. This entailed using Zoom, with breakout rooms and a brainstorming and design software (Miro board) that provided a vast virtual collaboration space for collaboration. Key to this workshop was condensing the design thinking process in manageable blocks and rapidly move from idea to presentation within a few hours as a ‘taster’ approach [169]. It was more of an abridged sprint [170, 171] to rapidly transform an idea to a prototype.
Open Lab
Based at Newcastle University, Open Lab is a research group that works on advanced Human-Computer Interaction (HCI), social innovation, digital citizenship, sustainability, design futures, social innovations and machine learning. With its multidisciplinary and cross-disciplinary groups, Open Lab researchers address imminent challenges in healthcare, education and social justice. Much of the work undertaken by Open Lab designers and collaborators engages the perspectives of “normal citizens” in participatory design, co-design and collaborative design. This aims to bridge the gaps between technology, scientists and society; effectively, Open Lab creates sociotechnical learning systems in health and beyond.
The workshop aimed at eliciting the participants’ objectives, perspectives, requirements and concerns by testing a menu of participatory co-design tools on a Miro board (Figure K). The groups were asked to apply the various participatory co-design tools in an invented Learning Health System scenario. These tools were sourced from online, open-source databases of design tools: Service Design Tools [172], Design Kit [173] and Right Question [174].
There is limited evidence for how to select the most appropriate tools [167]. In the workshop, participants selected a range of tools to address the same challenges, illustrating that the choice of tool can be influenced by the task, the stakeholders, and by the type of knowledge sought. Participants noted that each tool provided a different perspective on the complexity within the task.
There are also many overarching frameworks to guide participatory co-design. Each framework can be assessed against the core principles listed above, the ISO 9241-210 standard and the preferences of the Learning Health System stakeholders and developers. The Point of Care Foundation [175] offers a guide and toolkit for running Experience-based co-design projects. The Good Things Foundation: Digital Health Lab [176] offers a step-by-step guide to co-design in health that could be applied to a Learning Health System. Teams can review these and other approaches to find the best fit for their stakeholders.
Participatory co-design should not be viewed as a one-off process within a Learning Health System, but as an integral, continuous process. By definition, a Learning Health System must continually learn. This learning and its application must be mediated by participatory co-design at every stage.