Series: Public engagement with research. Part 3: Sharing power and building trust through partnering with communities in primary care research

Background : This article focuses on potential strategies to support primary care researchers in working in partnership with the public and healthcare professionals. Partnership working can potentially to improve the relevance and usefulness of research and ensure better research and health outcomes. Discussion : We describe what we mean by partnership working and the importance of reflecting on power and building trusting relationships. To share power in partnership working, it is essential to critically reflect on the multiple dimensions of power, their manifestations, and your own power. Power can influence relationships and therefore, it is essential to build trust with partners. Next, we outline how the context of primary care research and decisions about who you work with and how to work together, are vital considerations that are imbued with power. Lastly, we suggest different ways of working in partnership to address different dimensions of power. We provide examples from primary care research across Europe regarding how to recognise, tackle, and challenge, invisible, hidden and visible power. Conclusion : We conclude by proposing three calls to actions to encourage researchers working in primary care to consider the multiple dimensions of power and move towards partnership working. First is to use participatory methods to improve the inclusivity of your research. Second is to include patients and the public in decisions about the design, delivery and development of research and its outcomes. Third is to address various systemic and institutional barriers which hinder partnership working

Patient Patients? : Achieving Patient Empowerment through active participation, increased knowledge and organisation

This study examines patient empowerment in two local diabetes branch organisations in Sweden. In particular, the study focuses on the organisations’ membership, participation and influence on external actors. The overall aim of this thesis is to explore patient empowerment in order to discern what influence patient organisations and individual members can have and how they use it. This study is based on both quantitative and qualitative empirical data. Interviews with active members from two local diabetes organisations were conducted and a survey was carried out to identify the members’ thoughts and feelings about their membership, motivations, participation and influence, as well as to examine their local organisation, its work and influence. The findings form an overall picture of how members experience their organisation, memberships and empowerment. Characteristics of the two local patient branch organisations were identified and the leaders were found to be intensely dedicated people. The interviews, survey and participant observations revealed the members’ opinions about their organisation, their reasons for joining, their involvement, participation and influence, as well as their understanding of the local organisation and the Swedish Diabetic Association (SDA) and their possibility to empower them. Without organisations, members felt that they could not have a significant influence on external actors and events

Mind the evidence gap : the use of patient-based evidence to create “complete HTA” in the twenty-first century

The aim of this paper is to review the concept of patient-based evidence in health technology assessment (HTA), drawing on philosophical ideas of knowledge in order to judge whether current approaches to the use of evidence for HTA are complete. We draw on a number of key sources, including key papers and book chapters, discussion forums, agency reports, and conference presentations. We develop the potential dimensions of patient-based evidence, describe its key attributes, and consider its future development. Patient-based evidence has the potential to be a key concept in HTA, comprised of a series of related elements of importance to patients. We recognize that we raise more questions than can be answered, but as an emerging concept, recognition and understanding of patient-based evidence is still developing. The concepts and methods that support its application in HTA require urgent development. We conclude that clinical and economic forms of evidence are not enough for HTA. For HTA to be complete, we need to consider all relevant aspects of the phenomena, including patient-based evidence. There is now an urgent need for the global research and HTA community to work together to realize the full potential of patient-based evidence through conceptual and methodological development and wider recognition. We advocate that a task force be set up to address these urgent issues

Series: Public Engagement with Research. Part 3: Sharing power and building trust through partnering with communities in primary care research

Background: This article focuses on potential strategies to support primary care researchers to work in partnership with the public and healthcare professionals. Partnership working has the potential to improve the relevance and usefulness of research and ensure better research and health outcomes. Discussion: We described what we mean by partnership working and the importance of reflecting on power and building trusting relationships. To share power in partnership working, it is essential to critically reflect on the multiple dimensions of power, their manifestations, and your own power. Power can influence relationships and therefore it is essential to build trust with partners. Next, we outline how the context of primary care research and decisions about who you work with and how to work together, are vital considerations which are imbued with power. Lastly, we suggest different ways of working in partnership to address different dimensions of power. We provide examples from primary care research across Europe regarding how to recognise, tackle, and challenge, invisible, hidden and visible power. Conclusion: We conclude by proposing three calls to actions to encourage researchers working in primary care to consider the multiple dimensions of power and move toward partnership working. First is to use participatory methods to improve the inclusivity of your research. Second is to include patients and the public in decisions about the design, delivery and development of research and its outcomes. Third is to address various systemic and institutional barriers which hinder partnership working.<br/