From research on to research with: a bottom-up participatory approach for setting research agenda at a rural health research unit

Abstract

Public health research often relies on top-down approaches that do not adequately address local needs or engage end-users as active participants. This article narrates the implementation of a bottom-up health research approach at the Model Rural Health Research Unit (MRHRU) in Puducherry, India, aimed at prioritising community participation in health research. The model leverages a participatory approach to integrate local stakeholders into the research process. The study outlines a structured, democratic process for stakeholder engagement, beginning with the identification and network-building of stakeholders and progressing through collaborative brainstorming, priority setting and project development. By aligning research initiatives with these ‘felt needs’, the MRHRU facilitates relevant and impactful health interventions. This approach, while grounded in the local context, provides a model for setting health priorities based on community perceptions, adaptable to other regions and settings, underscoring the benefits of participatory health research in eliminating health disparities and achieving health equity.

SUMMARY BOX.

• Public health research in many settings remains top-down, often excluding end users and overlooking locally perceived health needs.

• This study demonstrates a practical bottom-up participatory approach at a Model Rural Health Research Unit in Puducherry to set research priorities grounded in the ‘felt needs’ of the community.

• A two-step stakeholder identification process and a collaborative stakeholder network enabled inclusive representation of community members, healthcare workers and researchers.

• Through participatory brainstorming, feasibility discussions and consensus building, community priorities were translated into tangible, context-appropriate research projects.

• The model shows that sustained participatory health research can foster trust, align research with local realities and support equitable, community-driven health interventions in resource-limited settings.

Introduction

Historically, public health research has engaged in the inquiry of the social and environmental factors influencing health and disease in a holistic manner. However, over the years, the trend of emphasising individual-level risk through centralised programmes has diminished the connection between public health researchers and the public at large to a great extent.¹ This trend has swayed public health interventions in favour of top-down approaches. Despite their many shortcomings, often top-down approaches are preferred for health policy formulation and programme implementation, as they facilitate centralised and uniform decision-making, promote regulatory compliance and enable swift decision-making.^2–4 One of the key limitations of such top-down approaches in public health is the positioning of researchers as ‘health experts’ in contrast to the ‘lay public’, leading to a disconnect from the community and missing out on real-world implications.^{1 5} Also, the top-down model seldom takes the beneficiaries’ viewpoints into consideration, with the policy and/or the programmes almost always exclusively developed by the so-called ‘health experts’. The target population is considered to be a ‘passive receiver of services’, not stakeholders with an active role in the formulation of the policy or the programme.

The picture of public health research is not any different, with the research agenda increasingly being shaped by funding bodies and industry, along with health research professionals who align their research in line with the priorities laid down by these entities.^{6 7} The end users seldom play any role in the decision-making process. In many low- and middle-income countries, health research priorities are almost always determined by external entities, leaving end users ‘researched on’ not ‘research with’.⁸ To address the aspect of ‘research with’, bottom-up approaches giving due importance to the end-users are often proposed but seldom executed.⁹ The spectrum of bottom-up participatory approaches is diverse and evolving, all emphasising the need for engaging local communities and local experts as active contributors in the research process.¹⁰ Participatory models with a bottom-up approach ensure the involvement of people in health research, resulting in improved research outcomes and benefits to the people.¹¹ This article narrates the application of a bottom-up participatory health research approach in a Model Rural Health Research Unit (MRHRU) in Puducherry, specifically to set the research direction and priorities for the MRHRU in a participatory manner.

Model rural health research units: an overview

MRHRU is an initiative of the Department of Health Research, Ministry of Health and Family Welfare, Government of India, in collaboration with the Indian Council of Medical Research (ICMR). Established as part of India’s twelfth 5-year plan, MRHRUs aim to bridge gaps in rural healthcare research infrastructure and make high-quality healthcare research accessible in rural settings. Designed to integrate research into the local healthcare ecosystem, MRHRUs are positioned to address prevalent rural health issues, supporting evidence-based interventions to improve the quality of life in rural communities.¹² So far, 34 such centres have been set up across different states and Union Territories (UT) in India with three specific aims, viz., to enhance rural health services by transferring technology, facilitating collaboration among researchers, health operators and rural communities and expanding the geographical reach of health research infrastructure.¹² The scheme is designed in such a way that each centre is maintained and administratively managed by an ICMR institute and linked to a government medical college. The research programmes are initiated jointly to address the local healthcare needs. A Local Research Advisory Committee (LRAC), comprised of local subject experts, advises on the scientific merit of the research project proposals before they are initiated. While the MRHRUs are part of the larger state mechanism and dependent on government funding and institutional expertise, they retain the autonomy to address context-specific rural health problems.

The MRHRU at the UT of Puducherry was set up in 2019 with ICMR-National Institute for Vector Control Research (ICMR-NIVCR) as the mentor institute and Indira Gandhi Government Medical College and Research Centre as the linked medical college. Puducherry performs above the national average on various indicators, including literacy, life expectancy, sex ratio and human development.^{13 14} However, problems like Non Communicable Diseases (NCDs), mosquito-borne diseases and alcoholism have been found to be on the rise. The MRHRU in Puducherry is currently stationed at the Community Health Centre (CHC), Karikalampakkam, which has four sub-centres serving the health needs of a population of around 35 000.

Setting the research agenda: a bottom-up approach

Participatory approaches to health research involve establishing functional partnerships among researchers, health professionals, community members, political leaders, opinion leaders and, most importantly, beneficiaries who are often not included in the research process to facilitate community engagement in the research process to improve their own lives.^{11 15} Participatory research methods can take the form of consulting the community in advance regarding research priorities, engaging them in data collection and reviewing the intervention.^{16 17} However, a comprehensive participatory health research approach ensures maximising the involvement of the community at all stages of the research process, ranging from setting the research questions to the dissemination of the findings.¹¹ In the context of health research in rural India, ensuring participation in health research starts with engaging the community to make decisions on the research priorities based on their ‘felt needs’. To achieve a participatory model for health research, we adopted a ‘co-operation model of participation’ where local people work alongside researchers in determining research priorities.^{11 18} True participation ensures that the voice of the community is taken into account in an unbiased manner in a democratic space. Hence, a democratic approach involving the following steps was adopted in our model.

Defining the stakeholders

The first step for engaging in participatory health research involves identifying the stakeholders. The term ‘stakeholder’ is often used with multiple implications, but in a broad sense, “Stakeholders are those persons or organisations that have, or claim to have an interest or share in the project undertaking”.¹⁹ Operationalising the concept of stakeholders in the local context was important in ensuring that a true representation of the community got involved. Hence, rather than the research team arbitrarily enumerating the stakeholders, a two-step process of identifying the stakeholders was adopted. The first step involved the research team identifying a set of initial stakeholders from the healthcare sector. The first set of stakeholders identified by the research team included medical officers of the Community Health Centre at Karikalampakkam, Accredited Social Health Activists (ASHAs) who are layperson health workers hailing from the local community and healthcare staff at CHC Karikalampakkam, including doctors and registered nurses. The second step involved the identification of further stakeholders by the stakeholders identified in the first step. The second set of stakeholders included local political leaders, school teachers, volunteers from the community, Anganwadi workers, members of local bodies and a few other opinion leaders from the community. The list of stakeholders in these phases is listed in table 1. These steps contributed to mitigating bias and the use of democratic methods in the enumeration of the stakeholders. Also, the two-step process ensured that the voices of marginalised communities were represented by ASHA workers chosen in step one and the volunteers identified by the ASHA workers and others in step two. This also helped tackle some of the limitations of ‘invited participation’. Additionally, this model promoted adequate community representation through the chosen members, although the beneficiaries are not directly involved in the early phase. The outcome of this process was a list of potential stakeholders who shared at least some interests in the health prospects of the community served by the MRHRU. These stakeholders were then invited to collaborate in the next steps. The list of stakeholders enumerated at this point was a cross-section that served as a starting point, and depending on the nature of the projects, more stakeholders were enumerated and involved in the Participatory Health Research (PHR) model as new projects were initiated.

Table 1. List of stakeholders identified through the collaborative process.

Stakeholder group	Members of the stakeholder group	Total participants
Research team	Director, nodal officers, medical scientists, faculty from medical colleges, life scientists, social scientists, technical staff, field staff	15
Healthcare workers	Medical officers, doctors, nurses and ASHA workers from the community health centre	20
Community leaders	Local political leaders, elected members of local bodies	4
Opinion leaders	School teachers, Anganwadi workers, community volunteers	8

ASHA, Accredited Social Health Activists.

Establishing a stakeholder network

The second stage in the participatory approach that we adopted involved setting up a stakeholder network. The process involved enlisting all the stakeholders listed in the first stage, that is, ‘defining the stakeholders’ and contacting them to seek their participation. The potential stakeholders identified were contacted and explained about the mission and goals of the MRHRU and sought their oral consent to participate as stakeholders in setting up the research priorities and agenda relevant to the community. Once the individual consented to volunteer as a stakeholder, they were given an overview of the research agenda-setting session, in which the research priorities of the MRHRU were to be identified so that they could prepare in advance to present the health-related ‘felt needs’ of their community. Following this, the consenting individuals were enrolled as stakeholders in MRHRU records for continued contact. However, it is not a static enumeration but a dynamic and expanding network of stakeholders which evolves during the course of the research.

Engaging the stakeholders as partners

Securing stakeholder engagement in all stages of research is the hallmark of participatory health research.¹¹ True participatory approaches enable people to express themselves and make informed choices that can impact their lives, in contrast to ‘feel-good talk’ models of participation, which translate to no real-life implications.¹⁸ Hence, after the stakeholder network was established, we adopted a stepwise participation plan, starting with research agenda setting. The process involved the following steps:

1. Participatory Brainstorming: In order for the felt needs of the community to be set as the health research priorities, a participatory diagnosis is often the best approach.²⁰ While the opinion from the healthcare workers can provide valuable technical insights and opinions from the community can highlight the community’s lived experiences, each perspective on its own may be incomplete. Integrating both ensures a comprehensive and balanced approach to setting health priorities, aligning technical feasibility with the actual needs and preferences of the community. With this aim, the brainstorming session was designed in such a manner that all the stakeholders, both health professionals and beneficiaries, got a chance to express their opinions in a round-robin discussion pattern.

   Community leaders and opinion leaders were invited to share their perspectives first, which allowed for the expression of firsthand concerns and needs. This initial phase focused on capturing the authentic, felt needs of the community. After the inputs from the community leaders and opinion leaders were gathered, healthcare workers and the research team provided feedback. The feedback primarily assessed the feasibility of the expressed needs, considering factors such as resource availability, clinical viability and alignment with regional health policies. The feedback was followed by further dialogue between the community leaders, opinion leaders, healthcare workers and the research team to reach a consensus regarding the feasibility of addressing the proposed areas of research. This real-time exchange of ideas within the same framework ensured that community leaders, opinion leaders and healthcare workers were involved in the decision-making, were aware of the limitations of the MRHRU in taking up research in certain areas and were able to make informed decisions. This collaborative format facilitated a constructive exchange, enabling a balanced understanding that incorporated both grassroots concerns and technical feasibility. The initial brainstorming session lasted for 3 hours. The process helped generate a prioritised list of health issues based on stakeholder insights and research team evaluations that reflected a consensus-driven approach to health research priority setting in the rural context.

2. Setting the Research Priorities: Once the priority areas were identified, and the practical feasibility and limitations were enumerated by the stakeholders, the process of setting the research priorities was initiated. This involved further discussions and dialogues to set forth a feasible research agenda. Stakeholders, including community leaders, opinion leaders, healthcare workers and researchers, engaged in an iterative dialogue to ensure that each priority area was assessed in relation to available resources and community needs. This collaborative process allowed for a thorough evaluation of the practicality of implementing each research priority. The discussion focused on aligning the research agenda with local health challenges, funding and workforce capacity. Limitations, such as budgetary constraints, infrastructure gaps and time considerations, were addressed collectively, ensuring that selected research priorities were not only ambitious but also achievable. The feasibility of each potential research area was carefully examined to prioritise initiatives that could make an impact and be sustainable. This collaborative prioritisation helped in setting a research agenda that reflected a balanced approach, addressing pressing health issues while maximising the potential for practical implementation and optimal utilisation of the available funds, which is often limited and highly regulated in developing country settings. The final set of research priorities, with an overview of their feasibility, was discussed and finalised among the stakeholders before research projects pertaining to these priority areas were designed.

Developing the research projects

One of the most critical steps in engaging stakeholders as partners is to reach tangible research projects that address the research priorities identified through collaborative sessions in the stakeholder network. The research projects needed to be guided by community needs and informed by practical elements. With these considerations in mind, project proposals pertaining to the priority areas were generated. This involved generating stand-alone projects and also generating research modules addressing a research priority that could be fit into larger projects. Since we decided to work with a ‘co-operation model of participation’, the research proposals were developed by the researchers but with the stakeholder inputs being central to the research question and research process.¹⁸ The proposals, thus generated, were presented to the LRAC to ensure scientific rigour. The inputs from LRAC were incorporated into the original proposals, and the final proposals were then presented to the Institutional Human Ethics Committee for ethical clearance before the projects were implemented.

The process, including the identification of major health problems, determining the feasibility, prioritisation of the problems and setting research projects which draw from the WHO priority-setting triad of public health benefit, cost and scientific feasibility,²¹ is briefly summarised in table 2.

Table 2. Overview of the process of setting the research agenda.

Sl. no.	Felt needs	Proposed by	Feasibility analysis			Current status
			Expertise	Operational feasibility	Consensus
Non-communicable diseases
1.	Diabetes, hypertension and obesity	Healthcare workers, ASHA workers	✓	✓	✓	Project ongoing
2.	Cancer screening	ASHA workers	✓	X	X	Set for future research
3.	Autism spectrum disorder and intellectual disability	Community leaders, ASHA workers	X	X	X	Beyond immediate expertise
4.	Anaemia among children	Anganwadi workers, school teachers	✓	✓	✓	New stand-alone project initiated
5.	Micronutrient deficiency	Healthcare workers, ANMs	✓	✓	✓	Integrated as a component of an upcoming project
6.	Intervention for substance abuse (alcohol, tobacco and other substances)	ASHA workers, School teachers, community leaders, opinion leaders	X	X	X	Set for future research
Communicable diseases
7.	Mosquito-borne diseases	Community leaders, opinion leaders, ASHA workers	✓	✓	✓	New stand-alone project initiated
8.	Soil-transmitted helminths and hookworm	Healthcare workers, ASHA workers	✓	X	X	Set for future research
Health service delivery
9.	Need of nebulisation facilities in PHCs	Opinion leaders, community leaders	✓	X	X	Referral to the concerned department
10.	Need of diagnostic facilities at PHCs	Community leaders, opinion leaders	X	X	X	Referral to the concerned department
Miscellaneous
11.	Geriatric health problems	ANMs, ASHA workers	✓	✓	✓	Integrated as a component of an upcoming project
12.	Skin diseases and hair fall among people bathing in the local pond	Opinion leaders	X	X	X	Set for future research
13.	Drinking water quality	Opinion leaders	X	X	X	Referral to the concerned department
14.	Solid waste management	Opinion leaders	X	X	X	Beyond immediate expertise
15.	Stray dogs and dog bites	Community leaders, opinion leaders	X	X	X	Beyond immediate expertise
16.	Snakebite envenomation	Community leaders, opinion leaders	X	X	X	Beyond immediate expertise

ANM, Auxiliary Nurse Midwife; ASHA, Accredited Social Health Activists; PHC, Primary Health Centre.

Future directions

Setting research priorities and initiating research projects are only the starting point of participatory research. Participatory approaches are most successful when academic and community stakeholders are actively involved in every phase of the research process over the long term, that is, when they are sustainable.²² To achieve sustainability, any PHR models need to focus on three essential domains, viz., (a) maintaining strong relationships and ongoing commitment among partners; (b) preserving shared knowledge, skills and core values and (c) sustaining funding, staffing, programmes, partnerships and policy changes.²³ In order to attain continued commitment and cooperation among partners and to ensure that the democratic opinions of the stakeholders are taken into consideration, periodic review sessions are in place with a feedback mechanism. In order to preserve the knowledge, skills and values, training on participatory health research and community dynamics is envisioned for the research team and health workers. In order to sustain aspects like funding, staffing and programmes, the MRHRU relies on institutional facilitators by virtue of being a body funded by the state. This is of critical importance, as the funding comes from a state mechanism, the research must align with the priorities of the funding body. Since the funding body, as laid out in the objectives, seeks to address rural health issues through the MRHRU, there was minimal conflict between the PHR approach and the funding body’s priorities. However, this conflict can pose a challenge for some of the research units seeking to apply PHR approaches. This can be mitigated by looking for alternative funding bodies that align with the approach and collaborative models, involving other institutions. For the aspects, including programmes, partnerships and policy changes, the MRHRU targets disseminating the research findings to a larger audience through scientific and popular media. Efforts are also being made to bring about intersectoral collaborations by establishing partnerships with local self-government bodies and other departments. In this regard, to achieve sustainable health benefits for the community, detection of NCDs and certain other health parameters is provided as part of a larger population-based health survey in selected villages under the service of the MRHRU, in collaboration with local authorities. Also, DREAMS’24—a school-based intervention for dengue prevention—has engaged stakeholders, including teachers, parents and children, in successfully generating awareness on the prevention of dengue, a disease that remains highly prevalent in Puducherry.²⁴ The project has been taken up by the health and education departments of the UT to be continued under its programme after the initial year of the project under MRHRU. Such outcomes indicate that the PHR model is influencing research and policy decisions. These mechanisms also ensure the sustainability of the participatory nature of research at the MRHRU.

Discussion

Setting priorities for health research is crucial for assessing the effectiveness of investments in health system programmes, policies and strategies, a consideration that is particularly significant in resource-limited settings. Equally vital is the alignment of research initiatives with the broader needs of the community. Designing a successful public health intervention based on the perceived needs of the local community can increase the access and uptake of healthcare services, prompt behaviour change and improve health outcomes. PHR is one of the most efficient research models that employs a bottom-up approach to engage the stakeholders successfully in health research. PHR approaches are increasingly being used across the globe, including in developing countries like Iran and Nepal and in developed countries like the US.^{23 25 26} Participatory approaches are particularly useful in resource-limited settings where the limited available resources must essentially address actual health problems of the community rather than being abstract. Iran, for instance, has run a ‘community-based participatory health research programme’ since 2003, translating into 18 ‘Population Health Research Centres’ implementing multiple participatory health projects.²⁵ Such participatory approaches can help address the problem of health disparity and advance health equity for marginalised communities in resource-limited contexts. Globally, participatory health research approaches are on the rise, showing a positive trend toward inclusive research informed by the ‘felt needs’ of the community with which the research is implemented.

Adopting a bottom-up, participatory health research approach for setting research priorities at the MRHRU in Puducherry has helped align health research initiatives with local needs. By engaging a diverse set of stakeholders—from community leaders to healthcare professionals—this approach has fostered a collaborative research environment where the community’s perspectives are central to identifying and addressing pressing health issues. The approach could help the community voice out their ‘felt health needs’ and engage in meaningful discussions with healthcare workers and researchers. These discussions have helped the community members communicate their priorities, the healthcare workers understand gaps in service delivery and finally reach a consensus among the community, healthcare workers and researchers regarding tangible health research problems that can be addressed through a participatory health research approach. The MRHRU PHR model is of particular importance, as the model shows the feasibility of PHR models in rural settings. It is also to be noted that certain healthcare ecosystem aspects of Puducherry have contributed to the successful implementation of the MRHRU PHR model, including a network of well-trained ASHA workers, a relatively literate general public and cohesive community structure, among others. The model can, however, be applied in settings with limited resources as well. For instance, the two-step stakeholder identification and network-based communication strategies are adaptable to less literate settings and regions with less developed healthcare ecosystem settings. Also, while there are multiple PHR models, with the degree of participation ranging from co-option to collective action, a cooperative model was opted for in the MRHRU PHR model, aligning with the WHO guidelines on balanced representation in stakeholder engagement, giving adequate representation for different groups of people and areas of expertise.^{11 21} While the model draws from the WHO triad of public health benefit, cost and scientific feasibility in determining the feasibility and setting the priorities of research areas, the model differs in terms of community participation and representation at the micro level.²¹ The model also differs from the WHO designathon model, which is a short, innovation-focused co-creation event,²⁷ whereas the MRHRU model is a sustained, community-driven process that democratically sets research priorities through iterative local engagement. The MRHRU PHR model creates pathways for inclusive dialogue and shared decision-making and can, hence, be adapted and refined to suit the dynamic needs of diverse settings.

Limitations and challenges

While participatory health research can help address health disparities and improve the health of marginalised communities,²⁸ it comes along with a set of challenges as well. The first and foremost challenge pertains to the operational meaning of the term ‘research’. The agenda put forward by opinion leaders and community members can sometimes be pertaining to service delivery and facilities. While such factors necessarily constitute a health research component, community members can sometimes be too attached to this aspect, leaving behind the larger picture. For instance, a local political leader demanded setting up a health centre in his village. The demand was beyond the immediate scope of the participatory health research initiative, and also the nearest healthcare centre was within a 5-kilometre radius of his village. In such instances, the community and the research team need to reach a consensus regarding the boundaries and scope of the engagement through discussions on the operational meaning of research. Another challenge is the limited availability of expertise and operational feasibility. While some of the issues can be important research questions, the team might lack the resources and expertise to engage in that domain. Such challenges also present an opportunity to expand expertise and gather resources for effective participatory research in the future. While the model at the MRHRU, by virtue of being a ‘co-operation model’, frames the research projects with stakeholder inputs as central, the design and implementation of the research projects are often done by the research team, with the community’s role being limited to agenda setting and getting informed of the research outcomes in most cases. However, in certain projects, such as DEAMS’24, participants engage actively at every stage, from defining priorities to evaluation. Thus, the extent of participation varies with the project’s nature and cannot be uniformly standardised. Yet another challenge is the underrepresentation of certain groups. Often, individuals with greater power overshadow the underprivileged, both in terms of representation at the participatory platforms and in terms of voicing opinions. This needs to be effectively addressed to ensure that the opinions that arise in the participatory process are the actual opinions of the marginalised and underprivileged. This could be achieved to an extent by the two-step process of enlisting stakeholders that we adopted and ensuring that the participants are given due importance in the participatory discussions. Another challenge could be the loss of interest among participants owing to reasons ranging from personal interests to slow research outcomes. This ‘slowdown of enthusiasm’ needs to be addressed to ensure the long-term success of participatory health research. Yet another challenge is associated with leadership dynamics. While the PHR approach is incorporated into the work philosophy of MRHRU, the degree of implementation relies heavily on leadership. Hence, changes in leadership can impact the vision and sustainability of the approach, either favourably or adversely. However, despite the challenges it poses, participatory health research helps address the question of health disparities effectively by engaging the affected communities.

Conclusion

Bottom-up participatory health research approaches facilitate a more inclusive, needs-driven research agenda that reflects the lived realities of the population, aligning health interventions with local challenges and available resources. The participatory framework not only bridges the gap between researchers and end-users but also empowers communities by recognising their voices and experiences in health decision-making processes. It also helps transition health research from being an externally imposed activity to a collaborative process that fosters trust, enhances the relevance of interventions and contributes to long-term health equity. Despite being advocated widely, there are only a few practical demonstrations of its application across public health literature.

This article demonstrates the application of a bottom-up participatory health research approach in a resource-constrained rural setting for setting health research priorities in line with the perceived health needs of the community. Although challenges such as operational constraints and participant retention have to be addressed, this model highlights its potential for replication in diverse rural and resource-limited contexts for setting health research priorities. Embedding such participatory frameworks within public health research ecosystems will be pivotal in achieving sustainable health outcomes and addressing systemic inequities. By reimagining health research through the lens of partnership and shared accountability, bottom-up approaches promise to transform the way health systems respond to the needs of underserved populations, contributing to more equitable and impactful public health practices.

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.