Co-designing healthcare systems: between transformation and tokenism

Over the past two decades, attempts to improve healthcare quality have increasingly focused on the use of co-design approaches to transform healthcare systems. ¹ Rather than redesigning healthcare de haut en bas, with lead clinicians and managers playing dominant roles, co-design approaches seek to involve a range of end-users – e.g. patients and healthcare professionals – in all stages of the design process. This approach involves a reconfiguration of the role of designers, whose task has shifted from putting a ‘beautiful wrapper’ around ideas that others have already generated to a more strategic role of curating ideas that better meet end-users’ needs and desires. Furthermore, radical forms of co-design extend the definition of ‘designer’ to include all those who possess relevant information and insight, thus accessing vital knowledge resources that arise from, for example, patients’ experiences of illness rather than medical qualifications or technological information. At the same time, this approach ramifies the scope of design thinking beyond the design of objects and devices to embrace complex systems, strategy and organisations and extends the temporal focus of design beyond the short-term horizon of innovation towards the longer term (and more challenging) horizons of implementation and user experience.

Co-design approaches thus appear to offer patients and previously marginalised healthcare professions (e.g. nursing, midwives, healthcare assistants) a more significant role in redesigning healthcare systems than they have enjoyed hitherto. However, a number of potential barriers are likely to present themselves to leaders of co-design processes, whether these leaders are managers and clinicians or, as now happens with increasing frequency, less powerful stakeholders. It is important to acknowledge and engage with these barriers in order to maximise the likelihood of success and to avoid raising unrealistic expectations of co-design processes. Consequently, following a brief overview of the rationale for and character of co-design approaches, this essay considers some of the most pressing of these obstacles and challenges to co-design in practice.

In many ways, the rise of co-design in healthcare can be understood as a response to long-term dynamics in medicine more widely. The development of scientific medicine and modern administrative systems instigated a revolution in the availability and efficacy of healthcare in Western societies. In common with most revolutions, however, these developments have not distributed power equally. The startling explanatory and therapeutic power of biomedical science tend to favour doctors over other stakeholders in medicine, including not just patients but also professions such as nursing, social care and management.

Relationships between doctors and these other stakeholders embody so-called ‘wicked’ problems – problems that can never be finally solved, only managed in more or less effective ways. For example, a balance always has to be struck between conducting doctor–patient consultations in a time-effective manner to maintain the functioning of healthcare systems, on the one hand, and allowing sufficient time to engage with individual patients’ experiences, capacities and wider social contexts, on the other. With the best of intentions, doctors with full schedules (i.e. most doctors) may lack the time to explain every piece of biomedical jargon they use – and so their patients may leave with a suboptimal understanding of what has transpired.

Doctors bamboozling patients with biomedical jargon is just one manifestation of a wider sense of patient alienation, characterised by the feeling that healthcare systems exist mainly for doctors (and other powerful players) rather than patients. Serious clinical and service failings, such as those which occurred in the Mid Staffordshire NHS Foundation Trust in England in the 2000s, do little to challenge this impression. Less dramatically, everyday patient encounters with primary and secondary care systems frequently lead to feelings of frustration and powerlessness. Major challenges in this context include poor continuity of care, long wait times, insufficient access to services and fault-lines between different organisational units in healthcare systems (and between health and social care). Thus, while system redesign and quality improvement initiatives typically claim to be patient-centred, the realities of patient experience often point to the opposite conclusion. Similarly, while attempts have been made to facilitate greater inter-professional collaboration in healthcare, authoritarian professional hierarchies continue to dominate the practice of medicine. By raising the promise of a more egalitarian approach to healthcare system design and redesign, co-design approaches present a potentially significant response to these challenges.

Different types of co-design approach have evolved in different settings. Greenhalgh et al. ² distinguish between four main types, each emanating from different institutional locations: value co-creation (business and management); technology co-design (computer science); community-based participatory research (development studies); and the approach with greatest relevance to medicine, experience-based co-design (design science and healthcare management). Each of these approaches incorporate different guiding principles, end goals, participant types and timescales. For example, community-based participatory research is typically situated in developing world contexts, aims to address power imbalances to overcome inequality and incorporates vulnerable communities alongside researchers in long-term projects, while experience-based co-design aims to improve patient experience of health services by involving relatively powerless stakeholders (e.g. patients and marginalised staff) in collaborative re-design processes of varying length, focused on perceptions and emotions of individual patients and staff members. In specific projects, co-design can occur at different points along a continuum of engagement between the extremes of mere consultation and full stakeholder involvement, and can be focused upon short-term/small-scale projects (e.g. designing a patient information leaflet) or long-term/large-scale projects (e.g. redesigning consultations in a hospital outpatient clinic). Despite these differences, there are common factors across different approaches, including a shared focus on systems, individual experience and the importance of processes and relationships. These approaches may overlap to some extent in practice and lessons from one kind of approach may be applicable to another (as shown below with reference to issues of power).

Examples of co-design projects in healthcare are not difficult to find. At the organisational level, design consultancy firm IDEO worked with nurses, doctors and administrators in Kaiser Permanente to improve the quality of experience for both patients and staff, e.g. by re-designing handovers during nursing staff shift changes. ³ In England, instances of wider, system-level experience-based co-design include ‘whole-systems events’ in which patients and staff jointly mapped out care pathways (e.g. for acute kidney care) from the user’s perspective in order to highlight sticking-points and co-design potential improvements. ⁴ Other prominent examples include the use of patient and staff perspectives to improve mental and sexual health services in hospital and community-based clinics in London. ²

However, the transformative claims that are often made on behalf of co-design processes are challenged by a number of persistent difficulties. First, the evidence base in support of co-design is relatively weak. A recent report on experience-based co-design stated that while there is a growing (if frequently anecdotal) evidence base regarding the effectiveness of this approach, ‘we remain largely in the dark as to the relative value of this particular approach in comparison to other quality improvement interventions’. ⁵ This challenge is not limited to co-design: a recent review of patient and public involvement, of which co-design is a component, stated that the evidence base for patient and public involvement in England ‘remains partial and often lacks coherence’. ⁶ In some contexts, this relatively limited evidence base could serve as a disincentive to undertake co-design processes, which could negatively prejudice opportunities to include patient and other stakeholder voices in service redesign. There is, thus, a pressing need for those undertaking such projects to ensure that rigorous evaluation procedures (i.e. procedures capable of capturing the complexity and diversity of impact arising from specific projects in different contexts over short-, medium- and long-term timescales) are incorporated from the beginning, alongside a commitment to disseminate the findings of evaluations. (The report mentioned above noted that, by 2014, only 17% of co-design projects surveyed had led to the publication of peer-reviewed papers reporting project outcomes. ⁵ )

A further problem relates to the character of participants in co-design processes involving patients. Recruiting patients for intensive and lengthy design projects can be challenging and expensive, and consequently co-design projects often fall back on self-selecting, pre-existing groups of patients who have already become involved with healthcare design. While such groups undoubtedly offer valuable insight, they rarely encompass the full range of patient perspectives, and often exclude the viewpoints of, for example, vulnerable, sick, disadvantaged and minority patients. Consequently, there is a risk of co-design processes marginalising these important perspectives unless strenuous efforts are made to reach out to hitherto silent stakeholders.

Another perennial challenge relates to expectations. Without clear communication, patients and staff who participate in co-design processes may become disillusioned when they realise the limits of what can be designed, funded and implemented in a given setting. This problem also has a temporal aspect. Unless stakeholders can continue their involvement over the extended time-periods required for innovation, implementation, evaluation and re-design of services, they may feel exploited – i.e. they may feel that they have been involved in co-design processes merely to access their valuable personal experience, which is then taken over and operationalised by ‘the professionals’. In this context, design scholars have noted the tendency for co-design activity to be concentrated in the concept design stage, and for stakeholder involvement to cease when new or redesigned healthcare systems come into use. ⁷ Stakeholders who contribute vital personal insight surely have the right to continue their involvement through the challenging post-innovation stages of implementation. As such, clarity about the goals of specific co-design processes is imperative, as is commitment to long-term stakeholder involvement.

A final potential barrier arises with regard to concerns about power, and more specifically with regard to who is empowered by co-design processes. This can be clarified by drawing an analogy with participatory approaches in development projects taking place in low-income countries. While such approaches have become popular since the 1990s on the basis of their apparent potential to incorporate local knowledge and empower weaker stakeholders, they have also attracted criticism on the grounds that they can obscure power differentials between different members of local communities (e.g. disproportionately benefitting existing elite stakeholders in poor country contexts) while also exposing vulnerable populations to Western influences promoting capitalism, democracy and modernity. When applied to medicine, these critiques of participatory development not only echo the aforementioned concern about unrepresentative patient groups but also make a deeper point that raises the spectre of tokenism – i.e. the notion that co-design processes are carried out to endorse pre-existing strategies and designs rather than to open healthcare system redesign to new insights from patients and other stakeholders. The concern here is one of deceptive appearances: what seems to be empowering and liberating might just be a fig-leaf covering the same old top-down processes of device and system design originating from managers, lead clinicians and other powerful players.

Even if this is true in some cases, however, we should not despair of co-design just yet. Power differentials will inevitably make themselves felt in all co-design contexts and (like all ‘wicked’ problems) can only be managed rather than being completely overcome; but they can be managed more or less effectively in different contexts and through the use of different techniques. Writing on participatory development, one scholar notes that ‘participation’s proven failure to escape from power … does not inherently prevent it from being one of many helpful discourses on which to draw in the pursuit of a radical, transformative political [practice]’. ⁸ Co-design may in many instances be exclusive, incomplete or short-term, but it still offers valuable opportunities for patients and other stakeholders to have a voice in healthcare system design. Experience-based co-design may waver at times between transformation and tokenism, but some element of transformation is better than none at all. By acknowledging and engaging with the potential barriers outlined above, moreover, the likelihood of meaningful change will be substantially increased.