Lived experience: a recognised health expertise for better person-centred care

The Framework for Meaningful Engagement of People Living with Noncommunicable Diseases (NCDs) and Mental Health and Neurological Conditions, due to be released by the World Health Organization (WHO) in May, recognises lived experience as a form of expertise that complements technical and political expertise.

The Framework was co-created using participatory research approaches and includes qualitative data largely driven by the experiences of individuals living with NCDs and mental health and neurological conditions: What was their experience accessing health services and engaging with a certain health stakeholder? What were the barriers? Did the person experience stigma or discrimination, for instance in the treatment of lung cancer or diabetes? What were the challenges?  What are the opportunities going forward?

The goal is to ensure that health policies and services for people living with NCDs (including cancer) and mental health conditions not only can hope for better outcomes in terms of prevention, diagnosis and treatment, but also improved quality of life for those living with disease.

The Framework further addresses the structural determinants and drivers of inequities, and looks at differences in perception of lived experience across cultures by prioritising “common decency principles” of dignity, power, equity, inclusiveness and commitment, which should be observed regardless of who an individual is and where they live, as well as actions to operationalise meaningful engagement, regardless of actors or contexts.

In a recent interview with UICC, Jack Fisher, a Technical Officer at WHO for the Global Coordination Mechanism on NCDs, discussed the development and implementation of the framework and its potential to improve health outcomes by fully integrating the perspectives of individuals with lived experience in a participatory and evidence-based approach to policymaking.

“A big part of the work is really trying to close some of the gaps around who's not represented. It's not only important about making sure individuals with experience have a seat at the table and set the agenda, but we want to now bring that table to those least represented.”
– Jack Fisher, Technical Officer, Global Coordination Mechanism on NCDs,
Global NCD Platform

The development of the Framework was prompted by civil society’s demand for more engagement in public health matters. It seeks to address gaps in representation and ensure that person-centred care becomes the norm rather than just a tool.

As the Framework nears completion, a project to implement it is in progress through WHO’s regional offices (Africa, Americas, Eastern Mediterranean, Europe, Southeast Asia, Western Pacific) and their respective country offices. They will assess the needs specific to each context and adapt the Framework accordingly, creating additional tools to support implementation.

“We will start with the Eastern Mediterranean region and use cancer as the entry point, bringing together related technical experts from the regional and country office, alongside relevant departments at the ministries of health, individuals living with or affected by cancer and national civil society actors. We will have a dialogue and look at what’s being done at the country level, determine how the Framework can be adapted and contextualised, and develop specific activities to support the needs at the country level.”
– Jack Fisher, Technical Officer, Global Coordination Mechanism on NCDs,
Global NCD Platform

Mr Fisher noted the similarities in the social determinants affecting NCDs, mental health conditions and neurological disorders, which can be addressed through an integrated approach rather than working in silos. He further emphasised the importance of local knowledge and perspectives in creating sustainable solutions.

The Framework has been designed to support all 194 Member States, guided by overarching principles of dignity and respect, intersectionality and a rights-based approach to health, equity and inclusiveness, empowering people with lived experience, commitment and transparency, as well as ensuring that it can be adapted to diverse contexts and integrated long-term into health systems.

The long-term goal of the Framework – the very concept behind ‘meaningful engagement’, says Jack Fisher – is for lived experience to be integrated into healthcare practices as a right, as a must-have, rather than a nice-to-have, with potential benefits for individual health outcomes, the efficiency and productivity of health systems and civil society as a whole.

“Many of the individuals who we have talked to feel very passionately about sharing their lived experience, not because it's predominantly going to improve their lives, but because they want to help the lives of others.”
– Jack Fisher, Technical Officer, Global Coordination Mechanism on NCDs,
Global NCD Platform

WHO will be hosting a public webinar on 11 May to introduce the Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions. Registrations are open here.