- Correspondence to: E Doble
In May 2023 the WHO launched a framework to engage people with non-communicable diseases in co-creating healthcare.1 The aim is to guide and support member states in engaging people with non-communicable diseases, including those with mental health and neurological conditions, in creating all aspects of healthcare, from policies to services. The framework is the fourth and last report of a series that started in 2021 by defining and justifying the motto “nothing for us, without us.”23 This set the expectation that nothing about people living with a non-communicable condition would be done without their involvement. All the reports have relied on people with lived experience bringing their views in informal consultations, reporting their experiences of health policies and care, and making comments and recommendations on drafts before publication.
The framework defines meaningful engagement as “the respectful, dignified and equitable inclusion of individuals with lived experience in a range of processes and activities within an enabling environment where power is transferred to people; valuing lived experience as a form of expertise and applying it to improve health outcomes.”
The call for co-creation of healthcare and health policy is not new, but the framework represents a paradigm shift. WHO’s constitution has valued the right of citizens to participate since its inception in 1948. However, the novelty here is the provision of concepts, examples, and approaches in an official framework, moving the dial from unclear rhetoric on participation, which can be tokenistic, to a more concrete pathway. Box 1 details some of the enablers identified in the framework.
Key enablers for implementing WHO framework on co-creating healthcare
Sustainable financing—Fund engagement work through national health budgets, including paying people with lived experience for personal contributions, and identify sustainable funding for institutional work
Redistributing power—Take an anti-racism, anti-oppression, anti-colonialism, anti-discrimination, rights based approach to engagement, and include people with lived experience in all relevant government and healthcare activities
Eliminating stigma—Establish independent structures to review and monitor engagement work to prevent stigmatisation
Capacity building—Scale up training, knowledge sharing, and communication among people with lived experience, member states, and other stakeholders
Institutionalising engagement—Legislate or mandate the involvement of people with lived experience; formalise most (>75%) activities and processes relating to engagement
These enablers send a clear message to decision makers that they need to value people’s experience in all decision making about health policy, healthcare, and research; facilitate implementation of the framework; and help overcome the biggest barriers to effective engagement. The framework defines three stages for each enabler—bronze, silver, and gold—to help member states prioritise their activities and track progress. This approach acknowledges international variation in experience and readiness, especially in areas such as financing and the redistribution of power.
The framework’s overall impact remains an open question. Inclusion of real world examples of achieving meaningful engagement would have been useful for others to build on. Implementing the framework will be challenging for many member states as it recommends a shift in ways of working, including substantial changes in priorities and power dynamics. Without practical case studies the framework could be seen as abstract and idealistic, leaving room for healthcare institutions, professional bodies, and health systems to argue that they already promote participation by people living with health conditions, or civil society, in their own way.
There is also a risk that only high incomes countries will adopt this framework. WHO has missed an opportunity to detail how co-creation of healthcare could help low and middle income countries overcome some of the serious healthcare challenges they face.45 Patient and public involvement in healthcare and healthcare policy is not a “nice to have” or an added extra to be bolted on once a population’s basic healthcare needs have been met. It is central to meeting those basic needs. Early research suggests it has potential to improve healthcare services, increase patient commitment to treatment, and improve health outcomes, although more evidence is needed.67
Whether the framework drives much needed change will depend on the support it receives from member states and global and local leaders. The report’s conclusion shares some of the WHO’s plans for implementing the framework, but it concedes that many stakeholders still neither understand nor commit to meaningful engagement with people living with non-communicable diseases.
Pilots of the framework are planned, and WHO will use the findings to develop additional tools, policy briefs, and adaptations to support implementation. Findings from any country or regional evaluation should be shared quickly and comprehensively to inform progress elsewhere, including encouraging other places to adopt practices shown to be effective.
Responsibility for implementation now lies mainly with WHO member states. But civil society, people with non-communicable diseases, the public, health professionals, and healthcare providers need to promote use of the framework within their own countries and local areas. Without this international and local advocacy, in partnership with stakeholders from different sectors, the framework risks being little more than a reference to be cited.