Improving Governance in Health Research Consortia

International Research consortia are groups formed to work on big health and biomedical projects. These groups bring together many institutions, both from universities and other types, across different countries. Each group has a specific goal and usually gets funding for a limited time to complete their research tasks.

Because health problems today can be complicated, funding organizations are encouraging teams that include experts from various fields. This helps in tackling issues like pandemics or climate change, which affect many parts of society. By having many different experts, consortia can gather knowledge and skills to deal with these complex challenges.

#Importance of Governance in Research Consortia

Running a large research Consortium involves careful management or governance. Governance means having a clear plan to guide actions towards a common goal. This includes making decisions about what the group wants to achieve and how it will go about doing so. Good governance helps to make sure that all partners in the consortium can work together smoothly and reach their objectives.

One important reason for effective governance is that research teams are becoming larger and include people from many countries. This diversity can lead to differences in opinions and goals, which need to be handled well. Clear rules are necessary for how data can be shared, how publications are managed, and how findings can be patented, especially when large amounts of data are involved. Governance also helps ensure that research practices follow laws about privacy and ethics.

#Governance Structures in EU-Funded Health Research Consortia

Consortia funded by the European Union (EU) have different governance structures based on their goals, but there are some common features. The way these consortia are set up is often influenced by the requirements of the funding agency. For instance, EU projects usually organize their work into sections called work packages, each with specific goals and timelines.

Governance structures also need to follow EU rules, including those concerning gender equality and inclusion. Additionally, various external regulations influence how consortia operate. These include laws regarding data protection and ethics, which each institution must adhere to.

A typical governance structure includes a management team that oversees the consortium's activities. Many consortia also have external advisory groups made up of experts who help guide the overall direction of the project. These structures are often accompanied by informal processes that vary from one consortium to another.

#Challenges of Participating in Governance Structures

Being involved in the governance of a consortium can require a lot of time from the Participants. Interviews with consortium members show that these governance structures can add extra work, potentially slowing down actual research efforts. Therefore, it is important for governance processes to support participants instead of adding unnecessary burdens.

While there has been some research on how governance works in health research consortia, many studies focus on the relationships between institutions in wealthy and poorer countries. Others look at rules about data sharing in research. However, little research has looked at how governance structures are valued by the people participating in these projects.

#The Need for Improvement in Governance Structures

Current literature often suggests ways to improve governance based on general principles rather than input from consortium members themselves. There is a gap in research that uses the experiences of participants to come up with practical improvements in governance.

Design thinking is one method that focuses on the needs of the people involved. It offers tools to create solutions for tough problems faced in health research. While design thinking has been used in healthcare studies, it has not been commonly applied in other areas of health research. By employing design thinking, researchers can generate ideas for improving governance based on participant feedback.

#Research Goals

This study aims to gather insights from participants in EU-funded health research consortia. The key research questions include:

1. How do the internal and external functions within these consortia typically operate?
2. What do participants think about the value of these governance structures?
3. How important are ethics advisory boards in the research process?
4. What suggestions do participants have for improving governance within the consortia?

#How the Study Will Be Conducted

The research will take place from October 2023 to July 2024. To gather information, researchers will conduct in-depth interviews with participants involved in these consortia. The interviews will focus on participants' views about the effectiveness of governance structures and how they could be improved.

Participants must be at least 18 years old, speak English, and have been part of an EU-funded health research consortium for at least six months. They could be lead researchers, other researchers, non-scientists, or coordinators. Participants must agree to take part and sign a consent form.

At least 20 participants will be interviewed, ensuring a mix of backgrounds and experiences. Recruitment will continue until enough diverse perspectives are gathered.

#How Participants Will Be Chosen

For participant recruitment, the study will use targeted sampling to select individuals with rich experiences. This means looking for people with different roles, genders, countries, and backgrounds in various consortia. The research team will reach out to their networks to find potential participants and will provide them with information about the study.

Participants will be invited to share their views and may also recommend others who could contribute valuable insights. Researchers will continue recruiting until they have enough information to draw meaningful conclusions.

#Data Collection and Analysis Process

Interviews will be conducted using video conferencing to accommodate participants from different locations. The sessions will be recorded, then transcribed, and the recordings will be deleted afterward. Participants will have the chance to review and edit their transcripts if needed.

The researchers will analyze the data using thematic analysis, a method that allows them to identify key themes based on what participants share. This process will be flexible, adapting as new insights emerge from the interviews.

#Ethical Considerations

The study has received ethical approval, ensuring that it follows all necessary regulations regarding participant rights and data privacy. Participants will be informed about what their involvement entails and will give written consent before joining the study.

#Expected Outcomes and Future Research

Findings from this research can assist future health research consortia by providing evidence-based guidelines for governance structures. Consortia may use the insights gained to adjust their own processes, making them more efficient and responsive to participants' needs.

In the future, additional studies could build on this work to establish best practices for governance in EU-funded health research consortia.

#Conclusion

This study aims to reveal how governance structures in health research consortia could be improved. By focusing on the experiences of participants, the research hopes to identify practical changes that make governance more effective, ensuring that research objectives are met without placing unnecessary burdens on participants. Through this exploration, the study seeks to contribute valuable knowledge to the field of health research governance.