Collaborative Research: Involving Health Consumers and Knowledge Users is Imperative

Introduction
In healthcare research, involving health consumers and knowledge users in disseminating, translating and implementing research findings is essential for creating meaningful impact and fostering patient-centred care. By engaging these key stakeholders, research can be effectively translated into practice, ensuring that it is relevant, accessible and responsive to the needs and preferences of the individuals who will benefit from it. GIMBE Foundation has been fostering high-value, evidence-based, cost-conscious healthcare in Italy for over two decades, and in this blog, we explore the importance of including health consumers and knowledge users in research processes, offering practical recommendations for effective collaboration and meaningful engagement throughout the research dissemination, translation and implementation journey. This collaborative approach plays an important role in improving equity by ensuring that diverse perspectives and needs are considered, leading to the development of more inclusive and targeted interventions. This inclusive approach fosters greater trust, transparency and responsiveness to marginalised communities, ultimately reducing health disparities and promoting equitable healthcare outcomes.

Understanding the Role of Health Consumers and Knowledge Users 
Health consumers, including patients, families and communities, bring their experiences and perspectives to the research process. Their insights and preferences help ensure that research outcomes align with the realities of healthcare delivery and promote patient-centred care. Knowledge users, such as healthcare professionals, policymakers and administrators, are crucial in translating research findings into actionable strategies and implementing evidence-based interventions. Their involvement facilitates the application of research in real-world settings, promoting evidence-informed decision-making and improving health outcomes.

Importance of Including Health Consumers and Knowledge Users 
Enhancing Relevance and Applicability 

• Contextualising research: Health consumers and knowledge users provide valuable input in shaping research questions and methodologies, ensuring that studies address relevant and pressing issues faced by patients and healthcare providers.
   
• Tailoring recommendations: Engaging these stakeholders in the research process allows the development of recommendations and interventions aligned with the diverse needs, preferences and contexts of different populations and settings.

Bridging the Gap Between Research and Practice 

• Co-creating knowledge: Collaborating with health consumers and knowledge users encourages the co-creation of knowledge, bridging the gap between researchers and end-users. This collaborative approach helps to ensure that research findings are effectively translated into practice.
   
• Practical implementation strategies: By involving knowledge users in research dissemination, translation and implementation, feasible and contextually appropriate strategies can be developed to facilitate the adoption of evidence-based interventions.

Empowering Health Consumers 

• Shared decision-making: Engaging health consumers in research empowers them to become active participants in decision-making regarding their health, fostering shared decision-making and patient literacy.
   
• Access to knowledge: Involving health consumers in research dissemination encourages the creation of accessible materials that empower individuals to make informed decisions about their health and well-being.

Recommendations for Inclusive Research Dissemination, Translation and Implementation 
Building Partnerships and Collaboration 

• Establishing collaborative networks: Create formal partnerships between researchers, health consumers and knowledge users to ensure ongoing collaboration throughout the research process.
   
• Engaging community-based organisations: Collaborate with community-based organisations to ensure the dissemination of research findings to diverse populations and communities, fostering inclusivity and representation and fighting against misinformation. Tailoring communication strategies to different cultural contexts and languages can improve accessibility and relevance of the research findings. This approach empowers marginalised groups to actively engage with and utilise the research, bridging the gap between academia and communities to promote equitable and informed decision-making in healthcare.

Co-designing Knowledge Translation and Implementation Strategies 

• Early engagement: Involve health consumers and knowledge users in planning the research project, including designing knowledge translation and implementation strategies.
   
• Tailored communication: Develop clear and concise communication materials accessible to diverse audiences, using plain language and appropriate formats. A tailored approach in this context can enhance equity in healthcare by breaking down information barriers and empowering individuals from different backgrounds to make informed decisions about their health. This approach ensures that critical health information is easily understood and utilised, reducing disparities and promoting equal access to quality healthcare for all populations.

Capacity Building 

• Education and training: Provide educational opportunities to enhance research literacy of health consumers and knowledge users, enabling them to actively participate in the research process.
   
• Skill development: Support the development of skills necessary for health consumers and knowledge users to meaningfully engage in research dissemination, translation and implementation, such as critical appraisal and evidence-based decision-making.

Evaluation and Feedback 

• Continuous feedback loops: Establish mechanisms for ongoing feedback and dialogue between researchers, health consumers and knowledge users to ensure the research remains relevant and responsive to stakeholder needs.
   
• Impact evaluation: Assess the impact of involving health consumers and knowledge users in research dissemination, translation and implementation to inform future strategies and best practices.

A Careful and Cautious Approach is Always Needed
As we embark on processes that involve health consumers and knowledge users in integrated approaches, it is essential to exercise caution and mindfulness to avoid unintentionally exacerbating inequities. While collaboration with diverse stakeholders holds great promise for promoting equity in healthcare, it can also present challenges if not carefully managed. One potential concern is the risk of inadvertently reinforcing existing imbalances and privileging certain voices over others. It is crucial to recognise that not all stakeholders may have equal resources, influence or representation in the research process, leading to unequal opportunities for meaningful engagement. Moreover, without careful consideration, integrated approaches might inadvertently overlook the specific needs and experiences of marginalised communities, perpetuating disparities instead of ameliorating them.

To address these challenges, a proactive approach must be taken to ensure equity and inclusion throughout the research journey. Engaging in continuous reflection and dialogue with all stakeholders, including those from under-served communities, can help identify and address potential sources of inequity. Researchers should be mindful of power dynamics and work towards creating an environment that promotes open and respectful communication, where all voices are heard and valued. Additionally, implementing measures to ensure representation and accessibility, such as providing resources for participation and utilising plain language communication, can help level the playing field and foster a more inclusive research process.

Conclusion 
Including health consumers and knowledge users in research is imperative to promote patient-centred care. By fostering collaboration, co-designing strategies, building capacity and maintaining continuous feedback loops, researchers can ensure that their work is relevant, accessible and effectively applied in real-world settings. This collaborative approach strengthens validity and applicability of research findings and empowers individuals and communities to actively participate in decision-making and improve healthcare outcomes. By prioritising inclusivity and meaningful engagement, the gap between research and practice can be overcome, transforming evidence into tangible benefits for all stakeholders involved in the healthcare ecosystem.

Key Take- home Messages

• Including health consumers and knowledge users in research enhances relevance, bridging the gap between research and practice while empowering individuals and promoting patient-centred care.
   
• Collaboration with stakeholders facilitates co-creating knowledge, tailoring recommendations and developing practical implementation strategies for evidence-based interventions.
   
• Involving health consumers empowers decision-making, providing access to knowledge and fostering shared decision-making, while partnerships, co-design and feedback loops ensure inclusivity and meaningful engagement.

Authors
Tiziano Innocenti¹ and Nino Cartabellotta¹

1. GIMBE Foundation, Bologna, Italy

Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.