Integrating meaningful involvement of people living with non-communicable diseases in India's National NCD Programme: lessons learnt and opportunities for global, regional and national contextualisation and adoption.

“I know, I may have diabetes, but if I visit a Health Centre and if diabetes is detected, then you will stop sugar in my tea,” said a male farmer during community screening in a conversation with a Frontline Health Worker in an Indian village. This underscores the urgent need to meaningfully engage communities to address the staggering burden of non-communicable diseases (NCDs). Clinical, technological and digital advances for strengthening health systems will remain underutilised without the active involvement of people living with NCDs (PLWNCDs) and the community at-large. Based on recent global estimates (2019–2021), NCDs account for approximately 73% of all deaths and more than 80% of premature mortality (<70 years of age) in low- and middle-income countries (LMICs). In India, NCDs contribute to around 68% of total mortality, with nearly one-quarter (24%) of premature deaths attributable to NCDs. 1 2 The rising burden of NCDs poses major public health and financial challenges, particularly in LMICs, where out-of-pocket health spending often exceeds 40% of total expenditure, exposing households to catastrophic costs and impoverishment. 3 4 Experiences from the field of HIV and tuberculosis (TB) highlight the importance of meaningfully engaging lived experience champions in decision making processes and programme implementation. 5 7 Community-based TB care interventions improved case detection and treatment adherence, increased case notification rates, identified barriers and opportunities in the care cascade, and improved understanding of TB from the patient’s perspective. 8 A successful community engagement intervention in India reported a 32% decline in HIV prevalence among sex workers and an 80% increase in condom use among Men who have Sex with Men and transgender individuals, reaching over 600 000 high risk individuals. 9 These lessons reinforce the importance of meaningful engagement of lived experience champions to accelerate action to prevent and manage NCDs. Moreover, evidence from previous studies, conducted in India specifically for the prevention and management of NCDs, also underscores that integrating lived experience into health systems enhances effectiveness, adherence to lifestyle interventions and treatment outcomes by leveraging first hand insights in the design of NCD solutions. 10 11 In the context of globalisation and the information revolution, empowering people with greater health literacy and reevaluating power structures within health systems are imperative to foster equitable, bidirectional collaboration between communities and health systems. 12 According to the NCD Alliance, 13 “ People living with NCDs encompass a diverse group of individuals who either currently have or have had one or more NCDs. This inclusive term also extends to individuals closely connected to someone affected by an NCD, including family members, close friends and caregivers. NCDs encompass a wide range of conditions such as cancer, cardiovascular disease, chronic respiratory diseases and diabetes, along with mental health disorders, neurological disorders (eg, dementia), autoimmune and inflammatory disorders (eg, psoriasis, lupus, endometriosis), bone and joint conditions (eg, osteoporosis, arthritis), renal, oral, eye and ear diseases, as well as injuries and disabilities .” According to the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions, meaningful engagement is described as, “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 .” 14 According to the International Association of Public Participation, “Meaningful community engagement is understood as a graded, stage wise process that progresses from informing to empowering communities, encompassing the stages of inform, consult, involve, collaborate, and empower, with each stage building on the previous one.” 15 Despite growing recognition of its importance, meaningful engagement and involvement of PLWNCDs remains suboptimal or inconsistent due to a combination of structural, sociocultural and health system barriers. 16 Hierarchical and clinician centred decision making structures often limit opportunities for shared authority, while the absence of formal mandates, financing and accountability mechanisms constrains sustained engagement. 17 Capacity needs among PLWNCDs, driven by limited health literacy and exposure to policy processes, and insufficient investment in leadership development, further restrict active and organised participation. 18 19 Stigma, social exclusion, digital divide and competing livelihood priorities disproportionately affect marginalised groups, reducing their ability to engage consistently. 20 Evidence from systematic reviews and programme evaluations indicates that when lived experience perspectives are not meaningfully integrated, NCD programmes risk lower service uptake and adherence, poor alignment with user needs, reduced acceptability and weaker trust and accountability within health systems. 14 21 Moreover, one of the main threats is tokenism, which persists in hierarchical health systems when participation is limited to peripheral consultation without decision making authority, accountability or influence over policy and programme outcomes. 22 In such unfavourable settings, lived experience is either undervalued or valued symbolically but not institutionally, thereby reinforcing existing power asymmetries. In such scenarios, decision making authority and resources remain concentrated within institutions rather than shared with communities. 23 These barriers and consequences underscore the need for deliberate, structured and resourced approaches to institutionalise meaningful involvement of PLWNCDs as a core component of NCD governance and implementation. Several enablers of meaningful engagement of PLWNCDs have also been identified in published evidence. Systematic reviews of community participation and co-creation demonstrate that early and sustained involvement, clearly defined roles and feedback mechanisms that show how community input informs decisions are central to sustained engagement and improved programme acceptability. 24 25 WHO guidance further highlights the importance of investing in capacity building for lived experience representatives, alongside sensitisation of health professionals, to enable equitable participation and address power imbalances within hierarchical health systems. 14 Civil society facilitation and peer support structures also strengthen trust, continuity and collective voice, particularly in LMIC settings where social and health literacy barriers may otherwise constrain active engagement. 14 Over the past decade, a growing body of evidence and multi-stakeholder campaigns have underscored the need for meaningful involvement of PLWNCDs. 26 The NCD Alliance’s Our Views, Our Voices movement, release of the Global Advocacy Agenda of People Living with NCDs (2017), and the Global Charter on Meaningful Involvement of People Living with NCDs (2021), have been key civil society led milestones that have brought the much needed focus on a people-centred public health response to address the NCD crisis. 27 28 These efforts evolved through bidirectional information exchange from the global and country levels. Global civil society movements and normative frameworks were informed by national and regional experiences, including advocacy agendas and community led practices from LMICs, such as India. These shaped regional dialogues and contributed to the development of the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions. WHO publications including ‘ Nothing for Us Without Us ’ (2021), provide principles and guidance for Member States to institutionalise engagement of lived experiences. 29 30 These seminal resources have informed regional and national action towards operationalisation of lived experience involvement through sub-national policies and community led implementation processes. This practice paper traces global, regional (South-East Asia) and national (India) developments since 2017 that contributed to the institutionalisation of meaningful involvement of PLWNCDs within India’s National Programme for Prevention and Control of NCDs (NP-NCD), positioning India among the few countries to embed lived experience engagement within its national NCD policy. 31 Drawing on this trajectory, the paper offers practice relevant lessons for other countries, including LMICs, seeking to adopt meaningful engagement and strengthen their leadership for addressing NCDs. These insights are particularly salient in the context of the Political Declaration adopted by 175 Member States (including India) after the Fourth UN High Level Meeting (UNHLM) on NCDs and Mental Health, in December 2025. 32 The Political Declaration explicitly recognises the role of PLWNCDs and mental health conditions in shaping equitable, integrated and people-centred response to NCDs and mental health conditions. It emphasises that community driven strategies, early detection, integrated care and meaningful engagement with lived experience are no longer optional but essential components for progress in reducing premature NCD related deaths. By aligning and reaffirming India’s experience within this renewed global mandate, this paper illustrates how national and sub-national action can translate global commitments on meaningful engagement into sustained policy and programme implementation at the regional and national levels. 32 Civil society organisations (CSOs) are an important stakeholder in ensuring that evidence-based practices are adopted by governments to embrace meaningful engagement of PLWNCDs. In India, HRIDAY is a CSO promoting sustainable health among communities, people with lived experience, and youth. 33 HRIDAY serves as the Secretariat of the Healthy India Alliance (HIA)/India NCD Alliance, a civil society consortium focused on meaningful community engagement and involvement (CEI) for NCD prevention and control. 34 HRIDAY and HIA undertook formative work during 2017–2018 to lay the foundation for meaningful involvement of PLWNCDs in India. This work focused on eliminating the institutional obstacles that occasionally hinder these lived experience champions from actively participating in decisions and policies influencing their health. The goal was to establish a forum (safe space) whereby PLWNCDs could express their concerns, share their stories, and help to shape more inclusive and robust health policies and more empathetic healthcare services. Through these efforts, HRIDAY and HIA are co-creating systems to include PLWNCDs in the decision-making process, ensuring that national and sub-national health strategies reflect their viewpoints and needs. By encouraging the inclusion of these voices, HRIDAY and HIA are helping to close the distance between communities and healthcare systems, enabling the latter to be more sensitive and empathetic to the actual needs of people living with and impacted by NCDs. From 2017, the global, regional and national focus around meaningful involvement of PLWNCDs started gaining momentum through efforts coordinated by CSOs, lived experience advocates, WHO and other partners. This movement, guided by lived experience leadership, illustrates the interplay between evidence, policy and practice, towards the goal of scaling-up NCD prevention and control efforts ( figure 1 ).

The essence of true meaningful involvement of lived experience champions is that ‘ no one is left behind ’. PLWNCDs from vulnerable and marginalised communities, particularly those in rural areas, women, children, adolescents, LGBTQAI+ populations, geriatric age groups, lower socioeconomic groups and those with lower educational attainment (among others), face a disproportionate burden of NCDs, exacerbated by social, cultural and economic inequities. The HIA, HRIDAY and the Indian Institute of Public Health, Hyderabad co-developed the ‘ Report on NCDs and Health Equity in India ’ (2025). 63 The report proposes recommendations under four heads to ensure an equitable response to NCDs across the care continuum: (a) meaningfully involving PLWNCDs and caregivers from diverse population sub-groups; (b) augmenting participation of vulnerable and marginalised community groups and CSOs across the NCD care continuum; (c) strengthening people centred health systems for equitable NCD care; and (d) enabling a protective policy environment to address NCD risk. Released in September 2025, ahead of the Fourth UNHLM on NCDs and Mental Health, this report was aligned to the theme of the subsequent Political Declaration, 32 “Equity and integration: transforming lives and livelihoods through leadership and action on noncommunicable diseases and the promotion of mental health and well-being.” The timing of the release of this report in a HIA multi-sectoral convening, including senior officials from MoHFW, GoI, was important to inform India’s interventions during the UNHLM. 64 65

Capacity building was identified as an essential need for PLWNCDs to be aware of their condition, hone their skills and competencies to effectively address challenges, and serve as advocates for people-centred health systems. Equipping PLWNCDs with information and resources they need to navigate their health avenues helps them to be more ready to advocate for policies and interventions reflecting their individual and communities’ needs and experiences. Being recognised and acknowledged as ‘ community champions ’ who are an asset to their communities emerged as an important opportunity to promote meaningful engagement. An important need that emerged was providing opportunities for capacity building of people with lived experience to share their stories and become advocates. A Train-the-Trainers approach was followed to implement this one-of-a-kind capacity-building model for PLWNCDs. During stage 1 (June 2019), a ‘Training of Master Trainers’ was organised by the global NCD Alliance, in which three HIA country level lived experience Master Trainers were trained. 36 The Our Views, Our Voices Peer Trainer Manual, for this Master Training focused on ‘ Equipping People Living with NCDs to Drive Change ’. At stage 2 (August 2019), for ‘National Trainings,’ the three Indian Master Trainers conducted two trainings for nearly 40 lived experience champions in India. 37 The global manual was co-developed and adapted with lived experience champions for national trainings in India. 38 The seeds were sown to amplify the ask for PLWNCDs to be recognised as key stakeholders in the national NCD response.

Key HRIDAY/HIA personnel are members of the WHO Civil Society Working Group on NCDs, since its inception in 2018-till date. 53 54 HRIDAY is also represented in the Steering Committee 55 for the WHO Symposium on Meaningful Engagement of PLWNCDs, Mental Health and Neurological Conditions. 56 58 These representatives participated in the UN Multistakeholder Hearing on the Prevention and Control of NCDs and the Promotion of Mental Health and Well-being (May 2025) and delivered statements to underscore the urgent need for recognising lived experience leadership as an imperative for a comprehensive response to address the global, regional and national burden of NCDs. 59 60 These opportunities have been valuable for cross pollination of learnings and experiences grounded in evidence and lived experience expertise, at the global, regional and national levels, reinforcing a strong case for policy makers and other stakeholders to solidify the meaningful involvement agenda within NCD action plans. While LMICs, like India and other countries, face varied sociopolitical, cultural and socioeconomic environments, as well as different structures and organisation of their health systems, the milieu for PLWNCDs, their needs, challenges and priorities, find a common unifying ground, making the application of meaningful involvement principles and approaches universal, although with local context adaptation. 21 61 62

The ‘Our View, Our Voices’ movement was a landmark turning point for the NCD movement globally and in India. 35 In India, the process started with PLWNCDs sharing their personal stories in ‘safe spaces’ via Community Conversations (CCs), followed by sub-national consultations (2018) in four Indian regions to garner buy-in from lived experience champions across the country. These candid conversations and consultations fostered ownership and revealed challenges and opportunities for action at three levels: (1) individual and family level, (2) community level and (3) health system level. Challenges included difficulties faced in accepting and dealing with fear, anxiety and apprehension related to their conditions and navigating an unfriendly and aggressive healthcare system. Support for caregivers of PLWNCDs emerged as a strong need. Social exclusion and stigma linked to chronic health conditions were identified as major exacerbating factors, making PLWNCDs underestimate their social role. Being labelled ‘ patient-for-life ’ led to feelings of being a societal burden. Lack of a support system in the community led to social isolation, where they had to navigate the complex health systems without any guidance. An overburdened, complex, hostile and inequitable health system was reported as a major barrier to seeking health services and making active decisions about one’s health. A key ask was to recalibrate the health system and sensitise healthcare providers to be empathetic towards PLWNCDs. Prioritising lived experience voices in disease management discussions and a people-centred approach emerged as a crucial need for strengthening the health system. Successfully navigating the health system while managing their health conditions qualified them as ‘lived experience experts’ .

Another important milestone was positioning meaningful involvement of lived experience champions during India’s Presidency of the Group of Twenty (G20) for 2022–2023. 51 Through Civil 20 (C20), one of the official engagement groups of G20, convening CSOs, HIA contributed by making a strong case for prioritising the meaningful involvement of PLWNCDs, not just in G20 countries but also globally (April 2023). The C20 Policy Pack (a part of the official G20 dossier for G20 delegates) highlighted recommendations made by HIA as a representative of the global NCD and lived experience communities. 52

To operationalise and institutionalise the meaningful involvement of PLWNCDs as an important component of the NCD agenda, evidence-based contextual models are needed for implementing India’s NP-NCD guidelines. Moreover, NCDs rarely exist in isolation as standalone conditions. Multiple NCDs manifest as Multiple Long-Term Conditions (MLTCs) with complex treatment pathways. To develop these real life evidence-based models, HRIDAY is leading the CEI component of the National Institute of Health and Care Research-Global Health Research Centre for MLTCs. 66 This aims at large system transformation to improve care for people living with MLTCs in India and Nepal, through co-designing and implementation of an integrated, technology-enabled, patient-centred, high-impact, equitable health system intervention. The Indian Council of Medical Research (ICMR), GoI is also investing resources through the National Health Research Priority project in a pan-India, cluster randomised community-based trial being co-implemented by HRIDAY and the All India Institute of Medical Sciences, New Delhi, under the guidance of the Government of Haryana in one of the six Indian sites, Jhajjar, Haryana. 67 The intent is to test effective community engagement strategies to strengthen the implementation of the NP-NCD guidelines and make health systems and healthcare services more robust to meet the needs of communities.

Although the principles underpinning meaningful involvement are transferable across LMICs and even globally, their implementation must be tailored to local sociopolitical and health system contexts. Countries may draw on the Indian experience as a conceptual and procedural framework and vice-versa but should adapt engagement mechanisms through context-specific assessments, small-scale pilots and iterative refinement based on local governance structures, civil society capacity, digital access and sociocultural norms. Such context-sensitive adaptation ensures that meaningful involvement is feasible, equitable and scalable across diverse settings. Medical professionals and frontline health workers hold high esteem among PLWNCDs and the community at-large. Beyond clinical services, they also have the potential to lead community engagement and empowerment initiatives for the prevention, management and control of NCDs. They can be flag bearers of empathetic and equitable care, which involves equal buy-in from health systems and communities, benefiting all stakeholders. Reversing power dynamics in the health system and upgrading it to be integrated and people-centric are essential to effectively tackle the burgeoning NCD burden. Following the adoption of the Political Declaration after the Fourth UNHLM on NCDs and Mental Health, 32 India and other Member States have recorded their commitment to advance meaningful involvement of PLWNCDs and mental health conditions within their national NCD agenda. This integrated approach for NCDs and mental health is a catalyst to guide future course of global to grassroots action. This aligned approach should ensure that people living with mental health and neurological conditions are accorded due agency and priority, with dedicated efforts to weave in strategies that address the unique vulnerability of people living with mental health and neurological conditions, with or without other comorbidities. The ground in India is fertile to translate this commitment into tangible action at the national and sub-national levels. This depends on embedding structured, genuine engagement mechanisms within health systems, policy making processes and earmarking dedicated funds for strengthening PLWNCDs’ involvement. Support from CSOs, researchers, healthcare providers and policy makers can channelise lived experience leadership towards an equitable response to NCDs and the broader overarching people led agenda of sustainable development. “ We are all people living with NCDs. Even if some of us may not be diagnosed with NCDs, we are caretakers of people living with NCDs.” (Reflection from Informal Consultation conducted by WHO SEA Region: Voices of Individuals Living with NCDs and Mental health Conditions) 14

The Political Declaration adopted after the Fourth UNHLM on NCDs and Mental Health alludes to the 2030 Agenda for Sustainable Development underlining the need for a comprehensive and people-centred approach to address the multi-dimensional burden of NCDs and mental health conditions. 32 68 Embracing meaningful engagement of PLWNCDs and mental health conditions as the cornerstone of a 360 degrees response to NCDs, on the path towards Sustainable Development Goal (SDG) Target 3.4 ( Reduce premature mortality from NCDs by one third by 2030 and promote mental health and well-being through prevention and treatment ), has to be led by lived experience experts. There should be a coordinated multi-stakeholder approach to augment global, regional, national and sub-national action for meaningful involvement of communities, not just as a NCD issue but also for the overarching SDGs. The Fifth UNHLM on NCDs and Mental Health is scheduled in 2031, at the cusp of the term of the 2030 Agenda for Sustainable Development. Lived experience expertise and leadership must guide the road ahead, towards 2030, 2031 and beyond. The Political Declaration adopted after the Fourth UNHLM on NCDs and Mental Health calls for lived experience leadership as a driver for an equitable response to NCDs and mental health conditions. Although there are several global and national principles and guidelines on the meaningful involvement of people with lived experience and communities, particularly for HIV and TB, this approach is relatively nascent for NCDs. 5 769 It is important to ensure that the power and potential of lived experience and communities are realised and leveraged to enhance the quality, acceptability, and impact of equitable healthcare services. Some areas that warrant concerted action include: true community involvement necessitates embracing the concept and dedicating efforts towards engagement, involvement, and empowerment, and recognising the expertise of lived experience champions. NCDs often manifest as MLTCs or comorbidities, resulting in a fragmented healthcare system that is challenging for people to navigate. Health systems need to be reoriented to provide comprehensive person-centric care rather than being disease-specific. Health systems are typically hierarchical, with doctors and medical professionals placed at the top tier and people/communities placed at the bottom tier. Meaningful engagement of PLWNCDs can address this by providing valuable inputs for health systems and strengthening and augmenting uptake and satisfaction for NCD services. Involvement of communities at-large is also important for motivating people to avail early screening services, which can support early detection of NCDs and minimise the risk of complications due to delayed diagnosis and sub-optimal adherence to treatment advice. Meaningful involvement would truly be beneficial if marginalised and vulnerable communities, whose voices are unheard, can be brought to the mainstream. Countries need to develop capacity building opportunities for lived experience champions to hone their leadership and communication skills and overcome social, economic and digital divide. Formal capacity building in meaningful engagement and empathetic healthcare, needs to be prioritised for health professionals and frontline health workers to ensure an effective and equitable response to NCDs. Sustained meaningful involvement of PLWNCDs is enabled by a combination of institutional, relational, operational, and incentive-based factors: Institutional drivers: formal policy recognition, integration of meaningful engagement into NCD programme guidelines, and alignment with national and sub-national priorities promoting legitimacy, continuity, and protection beyond short-term project cycles. Sensitised and empathetic health systems: recognition of PLWNCDs as key stakeholders within the health system and not just mere beneficiaries of health services, is an important prerequisite for initiating and sustaining meaningful engagement of lived experience communities. Transition from being recognised not just as patients, but as people and partners, is critical. Human and relational drivers: Capacity building, peer support, and recognition of lived experience as a form of expertise sustains engagement and enables PLWNCDs to participate confidently and effectively in decision-making processes. Operational support systems: Facilitation by CSOs, logistical and digital support, and clearly defined roles are essential to translate participation into consistent and meaningful influence rather than symbolic involvement. Incentive and reward mechanisms: Appropriate compensation for time and expertise, reimbursement of costs, visibility, leadership opportunities and demonstrable impact on decisions, help boost respect, maintain motivation, strengthen commitment, reinforce accountability, and reduce the risk of tokenistic and ad hoc engagement. Policy integration at national level: Meaningful involvement of PLWNCDs has been formally incorporated into India’s NP-NCD, signalling institutional recognition of lived experience engagement within national NCD policies and programmes. 31 Operationalisation at sub-national level: State-level guidelines on meaningful involvement of PLWNCDs have been developed and adopted in Punjab and Maharashtra, translating national commitments into concrete roles, accountability mechanisms and decision making pathways for PLWNCD engagement. 43 44 Strengthened community-level governance: Engagement efforts have led to the establishment of Community Advisory Boards (in Rajasthan and Andhra Pradesh), creating structured and sustained channels through which lived experience from the grassroots informs programme planning and higher-level decision-making. 20 Institutional capacity strengthening: The need for capacity building initiatives has contributed to the establishment of the Centre for Empathic Healthcare, India at HRIDAY, informed by formative research from ongoing NIHR, UK and ICMR, India supported initiatives, reinforcing seminal efforts towards the integration of empathetic and people-centred approaches within health systems. 70 Global and national policy alignment: India’s official statements at the Fourth UNHLM on NCDs and Mental Health reflected national alignment with global commitments towards meaningful involvement of PLWNCDs. 64 65 However, there is a need for this global and national commitment to be translated into grassroots action through percolation of meaningful involvement with state and district level NP-NCD implementation plans. Formalise meaningful engagement through explicit policy mandates, budget lines and monitoring indicators within national and sub-national NCD programmes. This includes developing Standard Operating Procedures for operationalising the meaningful involvement component of NP-NCD. Institutionalise lived experience participation in policy design, review and accountability mechanisms to advance equity-oriented NCD responses. The Phase I of India’s National Multisectoral Action Plan for the Prevention and Control of Common NCDs (2017–2022) (NMAP-I) is due for renewal. 71 In order for meaningful involvement to be adopted in letter and spirit, it is important that NMAP-II integrates the meaningful involvement of PLWNCDs and mental health conditions under the ‘whole-of-society’ approach to address NCDs. Align NCD policies with social protection and welfare schemes to mitigate the economic and social consequences of chronic conditions. Reorient services from disease-specific silos to integrated, person-centred models that address multi-morbidity and continuity of care. Strengthen health provider capacity through training in empathetic, respectful and participatory care, recognising lived experience as complementary expertise. Establish structured engagement mechanisms, including advisory groups, co-design forums and feedback loops to ensure non-tokenistic participation in service improvement. Support community platforms such as safe spaces, peer support groups and Community Advisory Boards to reduce stigma and enable sustained collective engagement. Enable CSOs to facilitate community leadership, mobilisation and linkage between communities and health systems, particularly for vulnerable marginalised groups. Promote community-led awareness, prevention and early screening initiatives that leverage lived experience to improve trust and service uptake. Build capacity of PLWNCDs (people living with one or more NCDs and their caregivers) through health literacy, self-management and system-navigation support. Self-motivation, peer support, exposure to role models and enhanced health literacy exerts a positive impact on treatment adherence, treatment outcomes. Integrate psychosocial and caregiver support within NCD services to address emotional and caregiving burdens. Enable transitions from service use to peer support and advocacy, strengthening agency, resilience and sustained participation across the care continuum.

These trained champions identified the need to develop a common platform for lived experience champions to voice their priorities and demands to key stakeholders. HIA unified and mobilised nearly 250 lived experience experts across the country to co-develop the India Advocacy Agenda of People Living with NCDs (2019). 39 The India Advocacy Agenda addressed barriers to equitable NCD care, demanding inclusion in decision-making processes for treatment and NCD programming. It transformed lived experiences into strong advocacy, raising community awareness and promoting meaningful involvement in NCD prevention, care and management. The India Advocacy Agenda is pivoted on four principles: (1) Human Rights and Social Justice, emphasising the need to ensure equitable access to healthcare services; (2) Prevention, underscoring reduction in the incidence of NCDs; (3) Treatment, Care and Support, focusing on providing comprehensive and accessible treatment; (4) Meaningful Involvement, avoiding ‘tokenistic’ engagement and actively involving individuals with lived experience in decision making processes for treatment, management, NCD programming and health system strengthening. In 2019, after the release of the India Advocacy Agenda of PLWNCDs, COVID-19 severely impacted those with NCDs. The pandemic accelerated the digital transformation of healthcare and propelled telemedicine, enabling PLWNCDs to access online health services. 40 Dissemination of the India Advocacy Agenda was also realigned to a virtual mode. It revealed challenges in technological access resulting in a digital divide for many with lived experience, particularly those from vulnerable and marginalised communities. 41 42 Thus, digital literacy and support were identified as other needs for empowering PLWNCDs to effectively manage their conditions. During 2021–2022, HIA organised virtual subnational stakeholder dialogues and consultations that led to state-level action plans on ‘ Accessing Digital Healthcare Services during COVID-19 ’, focusing on agenda setting for meaningfully involving PLWNCDs in healthcare policies, programmes, and decision-making. 41 42 In 2022, after a consultative process involving key stakeholders, the states of Punjab (in North India) and Maharashtra (in West India) released state-level Guidelines on the Meaningful Involvement of PLWNCDs and CSOs. 43 44 This endeavour aimed to empower people in shaping a more inclusive, empathetic, and responsive healthcare system sensitive to the challenges faced by those with lived experience.

Dissemination efforts included featuring lived experience perspectives and needs through online publications, opinion editorials, blogs, podcasts, micro-documentaries, and other social media communication channels. 40 45 Many lived experience leaders from India are NCD Diarists (a compendium of stories of lived experience champions curated by the global NCD Alliance) with wide outreach, utilising social media to share their journeys, especially during the Global Week for Action on NCDs. 46 In February 2020, HIA was nominated to serve as the Founding Secretariat of the South-East Asia Regional NCD Alliance (SEAR NCDA). SEAR NCDA was established to unite regional civil society efforts in NCD prevention and control. 47 HIA leveraged this opportunity to contextualise and disseminate its model of meaningful involvement of PLWNCDs through the regional alliance. In 2021, a regional training module was co-developed, and individuals with lived experience from nine countries in SEAR were trained by country and regional experts from HIA, NCD Alliance and WHO. 48 These trained individuals subsequently established country level lived experience networks. HIA’s experiences and expertise were significant in these landmark deliberations, as the contextual relevance of these Indian and Regional experiences was converted into CSO statements during the WHO SEAR RCMs. 49 These statements, targeted for the attention of governments attending the RCMs, were instrumental in garnering buy-in from Member States and key stakeholders. These have recognised people and communities as key drivers of critical public health and development goals. HIA has delivered statements on meaningful involvement during annual RCMs from 2016 to 2025, along with partners such as NCD Alliance, World Heart Federation, and SEAR NCDA. 49 Expertise of HIA lived experience champions was recognised globally and by WHO during the SEAR Informal Consultation (2022) as best practice for meaningful engagement efforts in the Region. The voices of lived experience champions were synthesised into two critical reports under the ‘ Intention to Action ’ Series (2023), highlighting strategic milestones and lessons learnt. These reports led to the co-development of the WHO Framework for Meaningful Engagement of PLWNCDs and Mental Health and Neurological Conditions. 14 Lived experience champions from HIA are members of the Global Advisory Committee of the Our Views, Our Voices movement, proving their expertise as trained and seasoned advocates for meaningful involvement of PLWNCDs at the global level. This is a valuable opportunity for cross pollination of meaningful engagement experiences across geographies to overall bolster the lived experience agenda. 50

Concerted dissemination of lived experience messages, models, and mechanisms during key decision-making meetings, scientific presentations at national and international convenings, and media dissemination contributed to the Government of India (GoI) taking cognisance of the importance of community engagement and appreciating the field evidence from the India Advocacy Agenda of PLWNCDs. Policy makers considered both global and national evidence, and as a result, the Ministry of Health and Family Welfare (MoHFW), GoI, accepted the integration of meaningful engagement of PLWNCDs in India’s NP-NCD. 31 The country-level lived experience network is now working with HRIDAY (HIA Secretariat) towards the robust implementation of these guidelines across the country through sustained sensitisation and capacity building efforts.