Patient and public involvement in health research: a way forward

Introduction

Patient and people involvement (PPI) in research refers to studies conducted collaboratively with members of the public, engaging them as active contributors rather than merely subjects or recipients of the research. ¹ Patients and members of the public can play an active role at every stage of research processes related to their healthcare. Such involvement can enhance the quality of health research, ensuring it aligns with the needs of the intended community, resonates with the public, and contributes to their empowerment. ² The common examples of PPI roles include being members of a patient advisory group, obtaining feedback on patient-facing resources or contributing to research priorities. This involvement is deemed essential to ensure that the research is relevant to the population(s), and it will benefit and impact on communities positively. ³ Besides, PPI is seen as an ethical, democratic, and utilitarian approach, and researchers are recommended to take this into consideration and include PPI in their projects.

PPI in Western Countries

Strengthening PPI has become a key requirement in healthcare research proposals submitted to funding bodies in high-income nations. ⁴ Organizations like INVOLVE in the UK, the Patient-Centered Outcomes Research Institute in the US, and Canada’s Strategy for Patient-Oriented Research have been created to support and advance PPI in health research initiatives. ⁵ The Wellcome Trust (UK) also encourages researchers to use an engaged research approach that includes embedding stakeholder perspectives across the research lifecycle – from agenda setting, funding, and research design through to implementation, monitoring, and evaluation. ⁶ Studies have shown favourable response with better outcomes because of meaningful involvement of PPI in research projects, and the researchers also have expressed a rewarding experience. ⁵ The utility of PPI in guideline development emphasizes the value of including patient stakeholders in the process. In addition, it prompts consideration of whether guidelines created without such input are suitable for use. ⁷ In countries explicitly reporting PPI in their research, it is also evident that the funding agencies have made it mandatory for researchers to include a PPI component in the research proposal for funding applications. ⁸ Although PPI was introduced two decades ago in these countries, there is scope for improvement to move from tokenistic tick boxing exercise to meaningful engagement. ³

PPI in Low- and Middle-Income Countries

PPI in low- and middle-income countries (LMICs) is termed differently such as public involvement, patient engagement, or community engagement. The principles of PPI are not generally embedded across all the stages of the research cycle. It commonly comprises informing and consulting which reflects that the involvement is minimal. ¹ In a systematic review of PPI in health research that was conducted in LMICs reveals that while PPI does occur, it is often referred to using alternative terms, and comprehensive strategies for its implementation are seldom published. In addition, the effects of PPI on both participants and the research processes are often not documented. Nevertheless, when elements of PPI are applied – even under different labels – they have been associated with benefits such as enhanced community relevance, participant empowerment, and modifications to study design. This highlights that PPI in LMIC research has demonstrated positive outcomes that should be further explored and fully utilized. ⁹ The common barriers include lack of funding for PPI activities, limited awareness or training among researchers, power imbalances between researchers and community members along with language and literacy-related barriers among community members, which can hinder meaningful participation. ¹⁰

There have been studies in India that apply the concepts of PPI. However, it still constitutes minimal involvement and needs to be integrated into the entire spectrum of the research cycle, beginning from developing research question(s), planning methodology, designing questionnaire(s), analyses, dissemination, and implementation. Although there are studies documenting PPI in medical and dental sciences, it is relatively a new concept and needs to be incorporated in studies by researchers.^11,12 Significant efforts are required to foster direct collaboration with the actual beneficiaries of research, rather than limiting interactions to community intermediaries. ⁹ In order to encourage researchers to use PPI in their research, there is a need to develop framework(s) that will enable them to adopt and enhance research outcomes. In addition, creating awareness about the importance of health research among people that would address common myths is a very essential step and could make them come forward to participate in research. ¹³

Conclusion

There is a need to create awareness and advocate for applying PPI principles in research in LMICs. It is important that various speciality organizations and associations take cognizance of the need of PPI and encourage their members to include it in their research. In addition, the funding agencies can consider including a section on PPI which will make researchers understand and include it in their research proposals. The authors suggest a combination of both top-down and bottom-up approaches as suitable strategies comprising mandating PPI by the funding agency to incorporate PPI in the research protocol and creating awareness among researchers, respectively, for ensuring PPI in research in the LMIC context.