Opinion - 22/April/2021

People power as the driver and disruptor for the NCD agenda

Health care systems around the world are facing growing calls to make care pathways for people living with non-communicable diseases (PLWNCDs) more patient-centred. The solution is to give PLWNCDs a stronger voice and more direct input in managing their own conditions.

The views expressed are those of the author and do not necessarily reflect the position of FORESIGHT Global Health.


Noncommunicable diseases (NCDs) are the leading cause of death worldwide. In the context of COVID-19, higher vulnerability and mortality rates, disrupted treatment, repurposed infrastructure and additional factors and determinants impose serious challenges to the delivery of interventions for the prevention and control of NCDs and mental health conditions. However relatively limited attention has been paid to addressing these challenges at a global or local level. Moreover, there is a disconnect between the creation of global policies, and the adequate adaptation and implementation of these policies so they are appropriate and feasible for local settings.

Examples of person-centred approaches for people living with NCDs (PLWNCDs) have been established in some contexts. Many of these models focus on improved access to care and treatment for the individual, which can be costly for PLWNCDs. Despite these efforts, most PLWNCDs do not routinely receive services that offer meaningful input from the individual, the family, or other caregivers. Still, there is a limited understanding of the impact of meaningful integration of lived experience within the NCD agenda; there have been resounding successes in HIV/AIDs, tuberculosis and other infectious diseases. Potentially, lessons learned from the successful applications of this approach could be adapted and adopted by NCD policy and programme makers, to support the creation of more inclusive and effective local NCD and mental health agendas.

 

WE MUST REORIENT THE POWER TO THE PEOPLE

The participation of PLWNCDs in the co-creation of World Health Organization (WHO) NCD platforms and initiatives could offer an inclusive, diverse and intersectional approach to their development. This meaningful engagement could enable these individuals to become agents of change. To activate PLWNCDs, we need to create an environment where their lived experience can start to set the proverbial table, where they can be heard and can thrive. At the same time, we need to generate acceptance and cooperation at regional and national levels for this approach by using the WHO’s position as the leading health agency, and its various platforms and engagement models.

The WHO Global Coordination Mechanism on NCDs (GCM/NCD) hosted a virtual participatory PLWNCD Consultation in December 2020, which aimed to determine how we can harness the power of PLWNCDs, and integrate their expertise into existing WHO frameworks, networks, and strategies. The insights generated from the Consultation will set the foundations for the co-development of a WHO Framework for the Meaningful Engagement of PLWNCDs. In the long-term, this approach could weave the lived experience into NCD programmes, policies and projects, framing the NCD global and regional agenda – ultimately allowing us to achieve the NCD and NCD-related Sustainable Development Goals (SDGs), while also achieving our commitment to leave no one behind.

The Consultation programme was co-led by individuals-with-lived-experience advocates and hosted 112 individuals from six WHO regions. PLWNCDs co-designed the program and used the participatory platform to share their professional and personal experiences. We heard a variety of stories and perspectives, including the impact of COVID-19 on PLWNCDs and a greater need to focus on the intersectionality of lived experience. We also heard how the global NCD community could leverage the under-used human right to participate to ensure that PLWNCDs are involved in the planning and implementation of their own healthcare.

 

PLWNCDs ARE THE EXPERTS

The key insights that emerged from the Consultation reiterated that PLWNCDs are experts and require a platform to share their expertise. There is a need to meaningfully involve PLWNCDs throughout the whole decision process, from drafting to evaluation. PLWNCDs are not simply patients and should not be treated as such.

During the consultation, we heard that the right to participate is a salient feature of the right to health, which is provided for in the WHO constitution of 1946 and in article 4 of the Declaration of Alma Ata of 1978. Multiple voices implored PLWNCDs to mobilize and to ensure that people’s right to participate in crafting policy decisions that affect them becomes the norm in global NCDs discourses.

The consultation also highlighted that it is imperative that intersectional differences —such as co-morbidities, people living with different types of NCDs, culture, race and gender that led to differences in lived experience— are highlighted as an important strength of engaging PLWNCDs in co-designing inclusive NCD programs and policies that could cater to diversity at regional and national levels.

 

WE NEED A GLOBAL APPROACH, WITH VOICES  FROM  AROUND THE GLOBE

The themes raised in the consultation could help build a roadmap of actions that could lead to diverse perspectives and ethical and meaningful engagement of PLWNCDs. This could help the WHO and Member States move away from tokenism to full participation and integration. This requires data on opportunities, challenges, best practices and gaps that could be used as evidence to guide next steps in the co-creation of effective, inclusive and equitable responses to NCDs, including mental health; this data can also improve understanding of the local risk factors and determinants.

Armed with this new information, inspired NCD teams joined forces with the GCM/NCD and the NCD Department combining efforts to jointly hold an Informal Consultation with People Living with Diabetes (March 2021), with the aim of co-creating the Global Diabetes Compact and co-designing the Global Diabetes Summit (14th April 2021). The insights also informed the wider GCM/NCD work in this area – such as NCD Labs and Communities of Practice – supporting the wider goal of the developing a WHO framework for meaningful engagement of PLWNCDs.

 

A TIMELY CHALLENGE

Now is the time to elevate the voices of PLWNCDs. Meaningful engagement will embolden and elevate people with lived experience to co-create the roadmap and co-design and implement solutions for current and future challenges of the NCD agenda. There are still large and persistent gaps in information and evidence, making it difficult to recommend effective strategies for improving meaningful engagement of PLWNCDs. Nonetheless, this process adds to the evidence that supports meaningful engagement of PLWNCDs and shows that global collective action and social innovation can be ignited in a virtual space, which harnesses inclusiveness, respect and dignity.

Further detail on the full PLWNCDs Consultation can be found in the Nothing For Us, Without Us Report.

TEXT: Kwanele Asante is secretary general at the African Organization of Research and Training in Cancer. Bruno Helman is an advocate, founder of Running for Diabetes and program coordinator at the International Diabetes Federation.

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