Amplifying every echo; public partnerships in ongoing CONTROL (COgNitive Therapy for depRessiOn in tubercuLosis treatment) research study

Abstract

With the health and social care research trends shifting towards conception, development, delivery, and implementation of more evidence-based interventions, public partnerships have emerged as key foundational moral components to tailor best practices to conduct research with the patient, public, and community. This paper reflects on how public partnerships were established in the ongoing CONTROL research study to open, trustworthy, and mutually beneficial relationships with public partners. This paper presents a reflective case study that exemplifies collaborative research in action using the Public Involvement Impact Assessment Framework and the UK standard of Public Involvement. We reflected on our approaches to public involvement and engagement, establishing a public advisory group, its capacity development, and contribution to the main study and multilevel impact of relational community engagement. Our strategies can inform future public partnerships in funded projects, especially in lower- and middle-income countries.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-025-00787-z.

Plain language summary

People affected by Tuberculosis and depression face stigma, poor treatment outcomes, and lack of access to healthcare, especially in low-income communities and refugee groups. The VoICE of CONTROL initiative was launched as part of the CONTROL research program to establish and strengthen the public partnership regarding tuberculosis and depression and shape the research from the start. We held community engagement sessions to learn about people’s experiences with TB, stigma, myths, mental health, and challenges they face in accessing health care. From these sessions, we invited individuals to join the advisory group and contribute regularly to the CONTROL study’s design, intervention development and refinement, materials, and outreach activities. To enhance capacity development, training sessions were arranged for team and advisory group members regarding patient and public involvement in research. The feedback from the community and advisory group helped shape a culturally sensitive mental health intervention and awareness campaign. This paper presents how meaningful public partnerships can lead to more relevant, respectful, and inclusive research with underserved communities.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-025-00787-z.

Introduction

Public Involvement (PI) is defined as conducting research with public contributors rather than ‘to’ them [1–3] Community Engagement and Involvement (CEI) is “the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people” [4, 5]. It is the active participation of communities throughout the research process, utilizing participatory methods and collaborating with key stakeholders to enhance the relevance, quality, and implementation of health research. A term that incorporates both PI and CEI is ‘public partnerships’, which focuses on the involvement, participation, and engagement of patients, their carers, community, and public members with researchers and health care providers [6]. CEI within health and social care research focuses on empowering the communities to identify and tackle their prevailing health problems while establishing linkages with the research team to help find solutions for the community’s challenges.

In the context of lower and middle-income countries (LMICs), CEI is relatively new and under-explored; however, globally, patient, public, and community involvement and engagement are at the heart of research, and its importance has led to the development of guiding principles and standards [7–9] and engagement strategies based on participatory action research. The participatory action research approach involves active participation and collaboration between researchers, community members, the public, patients, and other stakeholders [10]. Community engagement involves building meaningful and collaborative relationships with communities to ensure that their values, needs, and perspectives inform decisions and actions [11]. In contrast, public partnership and participation refer to involving the general public or specific groups in research design, conduct, or dissemination. This collaborative approach allows for a more comprehensive understanding of the issues being studied and promotes the development of solutions that are more relevant and applicable to the community [12, 13]. For this reason, the involvement of public members and incorporation of a community engagement plan is an essential component of the grant application for internationally funded research [14–16].

The north-western districts of Pakistan, including Peshawar and Haripur, present a particularly complex setting for such work. These areas host both local populations and Afghan refugee communities, who face intersecting challenges of poverty, stigma, and limited access to health services. Within this context, tuberculosis (TB) is highly prevalent and is frequently accompanied by depression, a comorbidity that worsens treatment adherence and health outcomes but remains underdiagnosed and stigmatized.

Public partnerships in CONTROL research study

VoICE of CONTROL (Value of Integrated Community Engagement) was launched as a series of interactive activities to establish strong linkages with the community, public, and patient groups in Khyber Pakhtunkhwa, Pakistan.

At the very outset of the CONTROL research program (see Box 1 for information regarding the CONTROL study concept), public involvement and engagement was envisioned to establish a mutual understanding between patients, communities, community gatekeepers and influencers, civil society representatives, public contributors, and researchers regarding TB and mental health outcomes and to improve mental health and TB related awareness and to ensure CONTROL’s decision-making at every step of the research process was driven by insights from the patients, public, and community.

Box 1.

The CONTROL research study

Funding from the NIHR Research and Innovation for Global Health Transformation Grant has been secured by Prof. Saeed Farooq and Dr. Zohaib Khan (NIHR201773) on a 48-month project regarding Tuberculosis (TB) and mental health in low- and middle-income countries (LMICs). Worldwide, TB is the 10th leading cause of death. Depression is a major multimorbidity with TB in most LMICs. Pakistan is ranked fifth among TB high-burden countries and has the fourth highest prevalence of MDR-TB globally. The CONTROL program aims to develop and test psychological intervention for treating depression in Pakistani and Afghan refugee TB (and multidrug resistant TB) patients and to improve their adherence to anti-TB treatment. The program also aims to test the intervention’s effectiveness and cost-effectiveness and examine how the intervention can be implemented in real-world settings. Further details can be accessed from https://www.keele.ac.uk/globalhealth/research/control/

This paper reflects on the public partnership initiative of NIHR RIGHT CALL 3 funded CONTROL ((COgNitive Therapy for depRessiOn in tubercuLosis treatment) Research Study, which aims to improve tuberculosis (TB) and depression outcomes among local Pakistani and Afghan refugee TB patients. We reflected on our approaches to public involvement and engagement, establishing a public advisory group, its capacity development, and contribution to the main study and multilevel impact of relational community engagement, using the Public Involvement Impact Assessment Framework (PIIAF). The PIIAF is a structured framework to evaluate public partnerships. By aligning the activities with the framework’s core components, we systematically examined how involvement and engagement efforts were planned, implemented, and evaluated. The framework facilitated a deeper reflection on the inclusivity, ethical grounding, and relevance of strategies, enabling the identification of successes, challenges, and unanticipated outcomes. Through this approach, we uncovered how public contributions shaped research priorities and methodologies and the broader social and academic impacts of engagement.

PiiAF framework

The PiiAF framework is structured into two distinct parts, with Part 1 serving as the foundation for this reflective case study on public involvement (PI). Part 1 (Fig. 1) included the values associated with PI in research, the approaches to PI employed, the research focus and study design, practical considerations shaping PI activities, and the identification of feasible impacts.

Fig. 1.

Part 1 of public involvement impact assessment framework. (http://piiaf.org.uk)

Values associated with public involvement in the CONTROL study

The foundation of VoICE initiative was laid on the normative and substantive values (Fig. 2) aligning them with the CONTROL’s goals of improving tuberculosis (TB) and mental health outcomes in vulnerable populations.

Fig. 2.

Values associated with public involvement in VoICE of CONTROL

Normative values

The normative values focused on the ethical foundations of community and public involvement in the VoICE of CONTROL. The initiative was designed to nurture inclusivity, equity, and cultural respect, ensuring that public involvement was not merely a procedural requirement but a moral imperative. The study bridged systemic inequities by involving Afghan refugees and local Pakistani communities, enabling marginalized voices to shape intervention development and delivery strategies.

Substantive values

Substantive contributions were pivotal in enriching the initiative’s outputs and outcomes. The involvement of diverse community members was meticulously designed to provide critical insights into the stigma associated with tuberculosis and comorbid mental health issues, barriers to healthcare, and culturally appropriate solutions. This input was meant to directly inform the intervention development process, making it more responsive to the community’s needs. For instance, the integration of language-specific materials and culturally sensitive content was a direct result of public consultations.

Methods

Our manuscript focuses on the public partnership in the CONTROL study and reflects on their impacts. The methods are presented in two parts. First, we describe our approaches to public partnership activities embedded in the CONTROL study, outlining who was involved, what was done, and how communities contributed to shaping the research. Second, we explain the reflective case study approach used in this paper, detailing how we revisited themes from engagement activities, assessed outcomes across micro–meso–macro levels, and mapped our work against the UK Standards for Public Involvement.

Approaches to public involvement in the CONTROL study

The CONTROL study exemplified a multi-faceted and inclusive approach to public involvement, emphasizing the integration of patient, public, and community voices throughout the research lifecycle (Fig. 3). Guided by the principles of collaboration and empowerment, VoICE of CONTROL initiative demonstrates how participatory strategies can enhance the relevance and effectiveness of mental health interventions. The Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist (short form) was used as guidance for reporting PPI in this paper (Additional file 1).

Fig. 3.

Approaches to public involvement in CONTROL study

Early and sustained engagement

From its inception, the CONTROL study involved a public member during the drafting of the funding application, ensuring that community needs and perspectives were embedded at the conceptual stage. The CONTROL study’s principal investigators got in touch with her through a pulmonologist in Peshawar, as she contracted TB during her medical studies and had to undergo thoracic surgery for complicated TB, to remove part of the lung (lobectomy). Due to a persistent cough, weight loss (39 kg at one point), the traumatic experience of surgery, and severe side effects of drugs, she suffered from depression, so she had firsthand experience which was invaluable to this programme. This foundational involvement was crucial for contextualizing engagement strategies in regions where formal guidelines are limited.

Community identification

To understand the local and Afghan refugee community ecosystem in District Peshawar and Haripur (study districts in CONTROL study) as foundational to effective community engagement and PPIE, consultations with the Provincial TB CONTROL Program and Commissionerate for Afghan Refugees, Khyber Pakhtunkhwa were initiated on 11th Nov 2021 to identify the communities in the vicinity of high-burden tuberculosis sites and Afghan refugee camps aligning the initiative to CONTROL study’s aim.

Designing & conducting CE field activities; involving the community in involving the community

Our initial consultations and community mapping helped us identify community facilitators with the support of area counsellors, religious scholar of respective community and community gatekeepers which facilitated a deeper understanding of the inter-relationships of various sections of local and refugee communities with one another. The community facilitators had prior experience of working with government and non-government organizations. From the VoICE team, SA, SK, SF, AU, HH, and the community facilitator developed a plan to conduct 8 initial community engagement and awareness sessions per quarter (4 sessions in Peshawar and 4 in Haripur) to spread awareness regarding TB and Depression and to identify members for the public partnership advisory group. The sessions were attended by approx. 45–45 community members. Details of the activities conducted in the first quarter after the launch of VoICE are mentioned in Table 1. However, over the last three years, same pattern was used for conductance of awareness and engagement activities.

Table 1.

Timeline of CONTROL CEI initial activities (Dec 2022-Feb 2023)

S.No	Location	Number of activities conducted
1.	Pawaka, Rural Peshawar	2 (one in male hujra and one in female hujra) *Hujra is the traditional communal space serving as a central meeting point for the village or neighborhood where people gather to socialize, discuss communal matters, and resolve disputes
2.	Kalabat, Haripur	2 (one in male hujra and one in female hujra)
3.	Khazana Afghan Refugee Camp, Peshawar	2 (one in male hujra and one in female hujra)
4.	Paniaan Afghan Refugee Camp, Haripur	2 (one in male hujra and one in female hujra)

CEI activity at all the locations was planned as a parallel activity in both male and female hujras considering the socio-cultural demographics of the Khyber Pakhtunkhwa and ensuring active inclusion of both male and female residents. Prior to the activity on the due date, the CEI team visited the area to meet the hujra and area elders, male and female community leaders to extend invites and to make necessary arrangements. Separate meetings were held with male and female local religious scholars.

A guiding document was also developed for all the team members to ensure standardization of information shared and language used at both the male and female hujras focusing on:

1. Overview of CONTROL study and all about Tuberculosis – signs, symptoms, diagnosis, treatment, and myth-busting.

2. Mental health, depression, and stigma related to TB and depression.

3. Lived experiences of community members regarding TB and depression, barriers in health care seeking, and the community’s attitude towards TB and mental health patients.

4. Coping strategies for depression and relaxation exercises.

In the CEI team, male and female Afghan refugees working as research assistants in the CONTROL study were added to avoid language or dialect barriers during sessions.

Ethical consideration for the field activities

Although community engagement activities typically do not require formal informed consent or ethical approval, the team prioritized obtaining written informed consent from the female community members for their pictures to be taken from the back end of the hujra, ensuring their faces were not revealed and recording discussions, recognizing the sensitive sociocultural context of Khyber Pakhtunkhwa. This region’s cultural norms emphasize respect for privacy and dignity, particularly in female public interactions, making it essential to ensure participants feel comfortable and respected. By transparently explaining the purpose of capturing images and recordings and securing explicit consent, the team upheld ethical practices that aligned with local traditions and values.

Identification of public partnership advisory group members

After the initial 3 CEI field activities, the team was able to identify six advisory group members comprising 2 female and 4 male members from both the local community and Afghan refugees. During field engagements with the communities, participants were encouraged to nominate suitable individuals from their community to serve on the advisory board. Recommendations for male members were received promptly; however, there was initial hesitation in putting forward names for female representatives. To address this concern, the team held additional consultations with community representatives, female religious scholars, and women political leaders from the respective communities. Following these discussions, and after careful consideration, four women were formally invited through in-person meetings. Of these, two accepted the invitation to join the advisory board. Once constituted, regular monthly meetings were scheduled with the group, and they were updated regarding the three parallel work streams of the CONTROL study i.e., CONTROL intervention development and pilot trial, capacity development, and community engagement initiative as mentioned in Table 2.

Table 2.

Public partnership advisory group involvement in CONTROL study

Advisory Group Members: Of the six members, 2 females are from the local population, one having lived experience of both TB and depression and the other intensely involved with Afghan refugees. Among the males, 2 are from the local community, and two are Afghan refugees.

Engagement Frequency with Research and CEI Team Group members meet the VoICE team every month, however depending upon the need of intervention development and trial team, in-person and virtual meetings are arranged.

Remunerations: All the advisory group members are regularly remunerated for their travel and time for every single meeting and activity as per the current guidance [17]

Capacity development of advisory group members

Capacity development of advisory group members is essential for enhancing the quality of decision-making processes. By equipping members with technical skills and knowledge, they can critically assess research activities and contribute evidence-based insights. This ensures that community perspectives are not only heard but are scientifically grounded, leading to more sustainable and resilient outcomes. Initially the two PPIE advisory group members attended two online training sessions arranged by the Impact Accelerator Unit Team at Keele University UK and later all the members attended a refresher training module developed by Abbie Milner at the Keele CONTROL Team. After the training, the members extended their interest in joining the CEI team in engagement and awareness activities in both districts and later joining the team in various field activities. The members were also trained regarding informed consent and information sheets, qualitative data collection tools to get understanding of topic guides, and communication skills. The group was also involved in developing scripts and content for the community awareness flyers and role plays.

Research focus and study design

The Research Focus and Study Design component of the PiiAF framework emphasizes the importance of aligning public and community involvement (PPI) with the overall objectives and methodology of the research project. In the CONTROL study, public advisory group members played a central role across all work packages. In addition to monthly meetings, the members were actively involved with the intervention development team and shared feedback regarding intervention components and content, consent forms, information sheets, topic guides, duration of therapy sessions, and language of intervention. After the intervention development, the members were involved with the pilot trial process evaluation team and shared their written feedback on process evaluation topic guides which were duly incorporated. They also participated actively in community engagement activities, arranged TB and mental health seminars with the project team and worked closely with SA to bring innovation to community awareness. By integrating the perspectives of advisory group members throughout the research lifecycle, the study ensured that the intervention and evaluation tools were culturally sensitive, user-friendly, and aligned with the needs and expectations of the target population. This collaborative approach not only enhanced the rigor of the study but also promoted the co-creation of knowledge and meaningful community and public engagement.

Amplifying every echo; exploring practical issues to TB & mental health care seeking

The community engagement and awareness activities aimed to help the study team understand the community’s perspectives regarding TB and Depression, health-seeking, and myths prevailing. It also aimed to identify the public partnership advisory group members. After each community engagement session, detailed reports were generated for proceedings at male and female hujra at all the sites. The lived experiences of the community members, patients recovered from TB, carers, and religious scholars shared during conversations were noted by the team. The thematic categories emerged organically from engagement dialogues rather than a formal analytic procedure. The core themes that emerged regarding the community’s perspective of TB and mental health and barriers to health seeking are presented in Fig. 4.

Fig. 4.

Local Pakistani and Afghan Refugee’s perspective of barriers to TB and mental health care

Legal status issues

For many Afghan refugees and undocumented individuals in Pakistan, the absence of formal identification poses a significant barrier to accessing healthcare services. Refugee community members report that healthcare facilities often require legal documents such as proof of residence or refugee registration to initiate treatment. This requirement alienates undocumented individuals, leaving them unable to seek timely medical assistance. From their perspective, the lack of documentation represents not just a bureaucratic challenge but a systemic exclusion from life-saving health services. This gap further perpetuates health inequities within the refugee population, as many resort to informal or traditional remedies, delaying proper diagnosis and treatment of tuberculosis (TB).

Stigma and fear

The stigma surrounding tuberculosis is deeply entrenched in both Afghan refugee and local Pakistani communities especially in the females. Refugees emphasize that TB is often viewed as a “shameful” disease associated with poor hygiene, leading to social isolation and a lack of community support for those diagnosed. In the case of young women, families often conceal the disease due to stigma and the fear that it may hinder their chances of securing an appropriate marriage match. Fear of ostracization drives many to conceal their symptoms or avoid seeking medical care, worsening disease progression and development of mental health issues. Additionally, there is a pervasive fear of deportation among refugees when engaging with public healthcare systems, as many believe reporting TB might expose their undocumented status. These factors collectively discourage health-seeking behaviors, making stigma and fear a critical barrier to TB treatment.

Lack of awareness

Members of both refugee and local communities highlighted a significant lack of awareness about tuberculosis, its symptoms, transmission, and treatment and co-morbid depression and its treatment. Misinformation is widespread, with many attributing TB to supernatural causes or environmental factors rather than bacterial infection. This deficit in knowledge delays the recognition of symptoms and the initiation of treatment, especially in resource-limited settings where educational outreach is minimal. Refugees often rely on informal networks or community elders for health information, which may perpetuate myths rather than dispel them. Addressing this awareness gap requires targeted health education campaigns in local languages and culturally sensitive formats.

Language barriers

For Afghan refugees, language differences pose a significant challenge when communicating with healthcare providers in Pakistan. While many refugees speak Dari or Pashto, healthcare staff often communicate in Urdu or English, creating a disconnect that complicates diagnosis, treatment adherence, and patient counselling. Refugees’ express frustration over the inability to understand medical instructions or navigate the healthcare system. This linguistic divide not only hinders effective treatment but also exacerbates feelings of alienation among refugee patients. Culturally tailored interventions, such as employing interpreters or multilingual health workers, are essential to bridging this gap and ensuring equitable healthcare access.

Economic hardships

Economic hardships further exacerbate the challenges faced by refugees and marginalized Pakistani families in accessing TB treatment. For many, daily survival precedes health concerns, as limited financial resources force families to prioritize earning income over seeking medical care. Refugee community members frequently mention the high costs of transportation to healthcare facilities, diagnostic tests, and prolonged treatment regimens as major deterrents. Even when healthcare services are subsidized, indirect costs such as lost wages during treatment create additional burdens. The economic strain makes TB treatment seem unattainable for many, perpetuating cycles of poverty and poor health outcomes.

Almost all the participants of CE activities agreed that TB and mental health both being stigmatized pose a threat to the overall well-being of the patient and their carers. They suggested conducting regular awareness activities to break the chain of stigma and spread the facts to the underprivileged and marginalized communities. Regarding the CONTROL study, the members endorsed the need to have integrated care under one roof and a detailed counselling facility for both patients and their carers. From the Afghan refugees, the suggestion to dedicate a TB facility at both the district for refugees during the pilot and definitive trial was put forward.

Substantive outcomes of CEI in CONTROL study

The CEI activities within the CONTROL study generated substantive outcomes across micro, meso, and macro levels, demonstrating that engagement extended beyond dialogue to produce measurable impact. This was underpinned by an approach of relational community engagement [18], a practice-informed organizing schema, which emphasizes building trust, reciprocity, and long-term relationships rather than relying on one-off consultative events. It emphasizes collaboration, mutual respect, and co-creation, empowering communities to actively shape health outcomes while addressing social determinants of health. At the micro level, we empowered individuals by provided information regarding TB and mental health and developed trust, and belonging, enhancing knowledge and active participation in health initiatives, which enhances personal resilience and well-being. At the meso level, we strengthened community networks, groups and leadership, enabling tailored, culturally sensitive solutions and amplifying the voices of communities in decision-making. At the macro level, relational engagement drived systemic change, improving the relevance of research, institutional policy development, and healthcare services by compassion, and sustainable partnerships (Fig. 5).

Fig. 5.

Relational community engagement impact

Micro level (Public contributors)

At the micro level, the team focused on empowering the community and public members by enhancing their knowledge and understanding of Tuberculosis, co-morbid mental health issues, and the stigma associated, with them, their treatment and CONTROL study cognitive behavior intervention, its concept, development and delivery at the TB sites. This awareness enabled public contributors to make more informed decisions and actively participate in processes that directly affect their lives, creating a sense of ownership and responsibility. This engagement was observed to promote personal growth, as participants reported developing new skills in communication, advocacy, and critical thinking that enabled them to challenge myths and creating a more inclusive environment for TB and depression patients. Additionally, the field activities and community interactions provided a platform for addressing personal and community concerns, resulting in improved mental and emotional well-being and professional guidance.

From misbelief to awareness

During a mental health awareness session conducted by the CEI team in Pawakha village, a woman from the audience unexpectedly left and soon returned with another woman. She introduced her as her sister-in-law and shared that, for many years, the family had believed her unusual behavior was caused by black magic. They had sought help from spiritual healers but saw no improvement. However, after listening to the session, the woman realized her sister-in-law might be suffering from depression and needed proper medical attention. Moved by this realization, she brought her sister-in-law to the team for guidance and support. The CEI team always has a psychologist in the team to guide the community member on the spot and she referred the patient to the consultant psychiatrist in the CONTROL study.

Meso level (Community groups/leaders)

At the meso level, community engagement efforts strengthened the ties within local Pakistani and Afghan refugee community groups, between their leaders and research team, leading to unity and collective action. Constituting the advisory group based on community and public contributors, and their capacity development by equipping them with the tools, knowledge, and resources needed to drive positive change for the communities they belong to was ensured in the CONTROL. This is aligned with the VoICE aim that decision-making at every step of the research process is driven by insights from the patients, public, and community. All the efforts allowed for the development of tailored CBT intervention that was both relevant and sustainable.

Dedicated TB facility for the Afghan refugees during the CONTROL trial

Considering the needs of the refugees, one TB site each was specially dedicated for the Afghan refugees residing in Peshawar and Haripur to seek TB and depression treatment.

Community representation in CONTROL study steering committee

Including a community member in a CONTROL Trial Steering Committee along with researchers, pulmonologists, refugee officials etc. ensured the trial was relevant, ethical, and impactful by integrating community perspectives and lived experiences into the research process. This involvement provided critical oversight, ensuring intervention was culturally appropriate and patient-centered by integrating the TB and depression treatment under one roof at the TB sites.

Recognizing the inherent power asymmetries in such a multi-stakeholder forum, deliberate measures were taken to support equitable participation. Community members received orientation and continuous training to familiarize them with research processes and terminology, ensuring they could contribute with confidence. Meeting agendas and materials were shared in plain language in advance, and facilitators actively encouraged community members to speak early on key issues.

NIHR CEI guiding principles pilot project

To bring innovation to community awareness, the VoICE team collaborated with members of the Advisory Group to explore creative approaches for TB and mental health-related awareness in local communities. Recognizing the power of art as a universal language, the group embarked on developing unique art genres tailored to raise awareness about these issues.

The process was deeply participatory, with advisory group members contributing their experiences, cultural perspectives, and creative ideas. Together, they conceptualized developing innovative art genres to resonate with the community’s needs and sustainability. To bring this vision to life, SA prepared and submitted an Expression of Interest (EOI) to the National Institute for Health Research (NIHR) to pilot CEI guiding principles based on this idea.

The submission proved to be a success, and out of 37 EOI submitted to NIHR CEI Global, CONTROL’s study EOI was among the ten selected projects. This milestone not only validated the collaborative efforts of the team and public members but also set the stage for impactful, co-created art-driven community awareness medium development that could address pressing challenges and inspire sustainable change.

Macro level (University)

At the macro level, community engagement significantly enhanced the relevance and impact of the CONTROL study by aligning it with real-world needs. By actively collaborating with communities, Khyber Medical University established itself as a socially responsible institution committed to the public good, thereby strengthening its reputation and trust within society.

Ripple effects

As the CONTROL study progresses, so do the associated CEI and PPIE activities. The journey thus far has highlighted the importance of public partnerships in shaping various aspects of the study. The establishment of strong linkages with community stakeholders has not only benefited the current research but also laid the groundwork for future collaborations. Notably, the CONTROL’s VoICE initiative marked the first comprehensive community engagement effort at Khyber Medical University, setting a precedent that led to the conceptualization of the University’s first dedicated community engagement unit. This ripple effect demonstrates the far-reaching implications of effective CEI activities, as they have the potential to transform institutional structures and priorities, ensuring that community engagement becomes an integral part of the research ecosystem.

UK standards of public involvement

We also analysed and reported the VoICE of CONTROL’s public partnerships journey on six UK Standard of Public Involvement including inclusive opportunities, working together, support and learning, communication and impact evaluation (Table 3).

Table 3.

Public partnerships mapped to UK standards of public involvement

Standard	Description	Relevant Details from the VoICE of CONTROL	Impact
Inclusive Opportunities	Offer public involvement opportunities that are accessible and that reach people and groups according to research needs.	1. From its inception, the CONTROL study involved a public member during the drafting of the funding application, ensuring that community needs and perspectives were embedded at the conceptual stage. 2. Community identification was done in collaboration with the Provincial TB Control Program and Afghan Commissionerate KPK as a starting point. 3. Meetings were conducted with community facilitators to understand community socio-cultural and health-seeking dynamics. 4. Community awareness sessions were conducted to raise awareness regarding TB and depression signs and symptoms, treatment, and CONTROL study and paved the way for the team to identify advisory group members.	Encouraged broad participation and representation, ensuring inclusivity and equity.
Working Together	Promotes collaboration and mutual respect between researchers and the public throughout the research process.	1. The PPIE advisory group was actively involved in intervention development and trial evaluation 2. Regular monthly meetings with PPIE members to provide updates and gather feedback 3. Co-creation of CEI session content with community input 4. Co-creating art genre for community awareness	Built trust and strengthened collaboration, improving the relevance and quality of research.
Support and Learning	Offer and promote support and learning opportunities that build confidence and skills for public involvement in research.	1. 2 Advisory group members received training sessions by Keele University’s Impact Accelerator Unit and all received Refresher training developed by Abbie Milner 2. PPIE members were supported to participate in field activities and script development	Enhances skills and confidence of contributors, ensuring meaningful involvement.
Governance	Involve the public in research management, regulation, leadership and decision-making.	Lay members included in the CONTROL study’s Trial Steering Committee to reflect community values and safeguard participant rights.	Ensured accountability and alignment with ethical and community values.
Communication	Use plain language for well-timed and relevant communications, as part of involvement plans and activities.	1. All the activities were conducted in local languages. 2. Community awareness activities were conducted every quarter to communicate information regarding TB and depression and the CONTROL study and how it can benefit TB and depression patients. 3. Monthly meetings were conducted with advisory group members to update them regarding the progress of the CONTROL study.	Strengthened relationships and ensured clarity and mutual understanding throughout the project.
Impact Evaluation	Seek improvement by identifying and sharing the difference that public involvement makes to research.	1. Separate detailed reports for male and female CEI sessions 2. Lived experiences of community members and feedback integrated into intervention and trial designs 3. Ripple effects led to establishment of Khyber Medical University’s community engagement unit	Demonstrated value, informed future practices, and built credibility in public involvement.

Discussion

This manuscript reflects on developing public partnerships with local Pakistani and Afghan refugee communities in District Peshawar and Haripur in Khyber Pakhtunkhwa, Pakistan using the PIIAF. CONTROL, as a true global research study, blended the experience of global mental health experts to develop intervention aiming to improve mental health outcomes in Tuberculosis patients in Pakistan and Afghan refugees. This was achieved through a multidimensional public partnership program that ensured communities voices were heard, valued and integrated at every step of the process. Amongst the pioneer studies to launch a comprehensive public partnership initiative, CONTROL serves as a landmark case study from LMIC for the future research programs seeking to work with diverse communities yet prioritizing the cultural norms and values. This approach validates how culturally informed and collaborative public partnerships can enhance the effectiveness and sustainability of interventions.

Public partnerships are not always inherently inclusive but an inclusive patient, public and community involvement and engagement-based partnerships ensures diversity and addressing health inequalities. Literature supports that patients belonging to marginalized or deprived communities face poor health outcomes [19] and despite the greater healthcare needs they are often underrepresented in health research [20] further limiting the relevance and applicability of research studies and their findings to these communities. In the specific context of tuberculosis, community involvement, engagement and participation is fundamental to improve the tuberculosis services maximizing its reach and sustainability for the community at large [21]. Public partnerships have a foundational role in bridging these gaps seeking feedback from the diverse communities. In this context, public partnership advisory groups, whether named as community advisory boards or PPIE advisory groups, are a critical component of public involvement and engagement in research. In the CONTROL study, the public advisory group served as a platform to bring the community’s voices to the research team and to make the community understand the study components and importance of their engagement with the team. This strategy of the advisory group serving as a bridge or link is also established by findings from different studies [22, 23]. In an effort to avoid barriers to effective engagement and to maintain a power balance within the advisory group, members were identified directly from the community during engagement sessions. This strategy was specifically designed to include a diverse range of voices to work together, rather than relying solely on established community leaders, a common practice that often perpetuates existing power dynamics [24]. However, despite its potential benefits, this approach remains underexplored in the literature, indicating a need for further research to evaluate its effectiveness in creating truly inclusive and representative advisory groups [25]. Our advisory group members provided feedback on consent forms, information sheets and other study material; a practice in line with previously conducted studies [26, 27]. Considering the diversity in communities in terms of socioeconomic status and literacy, the knowledge gap between advisory group members and researchers emerged as a significant challenge in establishing effective communication. For this reason, capacity development of the advisory group was focused on our program to build open, trustworthy and mutually beneficial relationships.

Community, patient and public involvement and engagement activities that are aligned with evidence-based intervention or implementation research studies not only enable community members to take ownership of their health-related issues but also guide research teams in refining both intervention strategies and content [28, 29]. This develops a deeper connection between researchers and the community, ensuring that the interventions developed are culturally sensitive, relevant, and more likely to be successful. For this reason, the community mapping and consultation with stakeholders in the CONTROL study began in 2021 emphasizing the importance of involving communities from the earliest stages of research which ensured ethical research conduct, transparency and trust building for a long-term collaboration.

The CONTROL’s VoICE was designed to involve public contributors throughout the project. The objective of developing public partnerships was to develop robust linkages that would enhance the quality of research by ensuring it is more relevant to the local context. This approach is supported by systematic reviews that emphasizes the importance of patient and public involvement (PPI) in research, highlighting its role in making research more applicable and beneficial to the community it serves [30, 31]. Including male and female religious scholars in every community awareness field session helped gain trust in communities. In Pakistan, religious scholars have a major contribution in shaping societal values and decision making so by engaging them, we were able to bridge the gap between scientific research and cultural and religious beliefs resulting in enhanced community participation and facilitated informed decision making. Our efforts to integrate community voices is not merely a token gesture but a fundamental aspect of research that aligns with the principles of co-production, where knowledge and insights from lived experiences contribute to the design and execution of research studies [32].

Conclusion

This paper presents the journey of public partnership blending community, patient and public involvement and engagement within the ongoing CONTROL study, particularly in the context of Pakistan as a Low- and Middle-Income Country (LMIC), where these concepts are still developing. Our reflections align with the existing literature; however, this initiative stands out as the first of its kind in Khyber Pakhtunkhwa, uniquely engaging both local and refugee communities. This dual involvement provides fresh insights into the shared physical and mental health challenges and the stigma experienced across both populations.

Lessons learned

Our reflections highlight that meaningful CEI requires early involvement, trust-building, and sustained dialogue and engagement. Embedding communities from the outset through identification, active field engagement, advisory board formation, and co-design of interventions enabled contextually grounded decisions and enhanced relevance by incorporating community voices. A second key lesson was the importance of working through culturally legitimate structures, such as religious leaders and community elders, which developed trust and helped address stigma around TB and mental health. Equally, intentional strategies for gender inclusion by creating safe spaces for women’s voices in conservative settings, strengthened the legitimacy of the process. Finally, the work demonstrated that relational engagement generates ripple effects beyond the study itself, with community voices shaping institutional practices, governance, and even the efforts to establishment of a CEI unit at university level illustrating how local engagement can translate into systemic change.

Challenges

In the context of Pakistan, where public partnership in the form of community, patient and public involvement in at infancy in health research, several challenges highlighted the realities of CEI in marginalized contexts. Stigma and fear surrounding TB and mental health significantly constrained open dialogue initially, requiring persistent engagement before trust could be established. The process also revealed knowledge and capacities gap between researchers and community members, which demanded sustained efforts in training, mutual learning, and adaptation of engagement strategies. These difficulties demonstrate that CEI is not a linear process but one that requires patience, flexibility, and ongoing negotiation to balance power dynamics.

Limitations

It is important to acknowledge that the insights presented here reflect practice-based learning rather than formal qualitative research. The themes were derived from recurring issues voiced in engagement sessions, captured in team reports, and synthesized descriptively, rather than through a structured analytic framework. Moreover, the work was conducted in two districts of Khyber Pakhtunkhwa among Pakistani and Afghan refugee communities; as such, the lessons may not be universally transferable, though they are relevant to similar LMIC settings where CEI is emerging.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

SF and ZKh are the co-leads in the CONTROL programme of research and approved the final manuscript for submission. SA, SS, and AM contributed to the paper writing and incorporated all the feedback from the wider team. SK and ZKi coordinated all the awareness sessions and field activities. FK, IH, AU, RZ, SU, HH, ZeK, and IR were involved in all the activities and coordination with the PPIE advisory group. AMi developed the PPIE refresher training module. Advisory group members (GY, AUS, FU, and AG) provided feedback on the manuscript and approved the final version. All the authors have read and approved the final manuscript.

Funding

The CONTROL programme of research is funded through the National Institute for Health and Care Research (NIHR), UK (grant number NIHR201773).

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Ethical approval was not required because this was a public involvement project. Written informed consent was taken from the community members. The manuscript is not reporting findings. It is reporting reflections from involvement and engagement and during activities NIHR guidelines for PPI were adhered. See NIHR guidance for more information, for example: https://www.spcr.nihr.ac.uk/PPI/resources-for-researchers/faq/do-i-need-ethical-approval-to-run-an-involvement-activity.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.