Abstract: Many different organisations work within the sphere of patient and public involvement (PPI) in the East of England. Many of the organisations have distinct roles within PPI and yet some of these roles, especially within the sphere of training and support, tend to overlap. The different organisations also tend to have access to specialised knowledge and resources. It is therefore important to have a platform where organisations can network and share knowledge and resources. The Research Design Service has been creating such a platform by bringing together the different organisations across the region working in PPI.

This presentation/poster explores the organisations involved in PPI in the East of England and explores how these organisations came together in regional forums to collaboratively work together to improve PPI across the region. One of the themes that will be explored will be how the regional working group collaboratively developed a highly successful training programme. Another theme will be the exploration of how the regional forum identified a lack of an organised PPI in research group in Bedfordshire and Cambridgeshire and proceeded to launch a new PPI in research group called INsPIRE to provide PPI input into health and social care research in the two counties.

Abstract: The Research for Patient Benefit (RfPB) programme is one of the National Institute for Health Research funding schemes, which funds regionally derived research projects in health services and social care. Launched in 2006, the programme has been in operation for over five years now. Patient and public involvement (PPI) has been embedded in the programme since its inception; however this was a new area to many involved, including to the programme management team, committee members and the applicants. The understanding of and implementation of patient and public involvement has developed enormously throughout the programme during this five year period.

This poster will provide an evaluation of how the level and nature of PPI has changed throughout the programme’s first five years and will outline the plan and future direction for further development of PPI in the programme.

Abstract: The Dutch Cancer Society (KWF) and the Breast Cancer Study Group (BOOG) believe that design and execution of clinical trials can be improved when patients become actively involved. A qualitative study is conducted – involving breast cancer patients, researchers and stakeholder organisations – to explore possibilities for active patient involvement in breast cancer clinical trials.

An advisory committee of six female breast cancer patients was established. Facilitated by a researcher they produced an advisory report during three meetings on possibilities for active involvement clinical trials. The advisory committee formulated three recommendations:

1. appointment of an advisory committee of patients who monitor the entire process of clinical trials (from design to follow-up)
2. inclusion of a patient (representative) in the research team as an equal member
3. involvement of individual patients for different aspects in a clinical trial. Within each phase of a clinical trial (design, information and recruitment, treatment, and follow-up and feedback) several aspects were identified in which patients’ input from the three different levels has additional value, for example contribution to questionnaires, outcome measurements, logistics, patient information, sharing experiences, feedback. In a dialogue meeting with different stakeholders, feasibility and precondition for successful implementation of the advice are discussed.

Abstract: PsyConnect is a collaborative research project that is adapting, implementing and evaluating a diagnosis-independent online tool in mental health. PsyConnect aims to support service users in articulating their values, objectives and concerns in ways that also help providers in adapting their expertise in relevant and individualised ways. The tool can be used through all phases of recovery processes and aims to strengthen continuity of care, as well as services users’ sense of control over their own recovery processes.

Our experiences in the PsyConnect project team are reported in this paper. Members include service user consultants, scientists, information technologists, and clinicians, all of whom participate as equal partners. Experiential knowledge is equal to but different than evidence-based knowledge. Service users provide personal insights into different aspects of recovery processes and how an online tool can facilitate these processes. They are impatient in their desire to improve care and insist that the project focuses on practical and simple solutions. Researchers are challenged to seek out research that can justify decisions based on service users’ requirements, as well as rethink the main research issues. When distinctions between “us” and “them” are blurred through equal collaboration, niceties are transcended and teamwork becomes more effective.

Abstract: Information and communication technologies (ICT) are increasingly used to support patients in managing their health, also in collaboration with health care providers. The study reported here is part of a larger, recently initiated project to design and evaluate an ICT-based tool to support mental health service consumers in recovery processes. The project is conducted in collaboration between service user consultants, scientists, technologists, and clinicians.

As part of the knowledge base needed to develop user requirements for the support tool, service user consultants are playing a key role in designing and conducting a survey among those receiving specialised and long-term mental health services. In addition to conducting the survey, service user consultants are key in defining user requirements for the ICT-based tool and in testing the iteratively evolving prototype. In this presentation we will reflect on the role played by service user consultants, and our experiences of how they influence the evolving knowledgebase used to design, implement and evaluate the ICT-based tool.

Abstract: Exploring the impact of PPI in research is currently a hot topic of debate; rapid growth of PPI in research in recent years has provided raw information with which to investigate the role of impact, and build an evidence base about how PPI can value to the research process.

The NIHR Research Design Service South East (RDS SE) provides PPI advice to researchers, and also offers a lay review service, and PPI grant to facilitate involvement in research design. RDS SE works collaboratively with our dedicated team of lay reviewers in other aspects of our work, for example leaflets and other publications.

The embedding of PPI into RDS SE processes and procedures has generated a variety of information that potentially places us in a strong position to investigate the impact of PPI.

RDS SE are currently reviewing the extensive and varied information about our lay review service, PPI grant scheme, and advice to researchers to uncover any emerging themes that will inform the impact evidence base.

The findings of this current review will be presented.

Abstract: The poster will illustrate the role the Mental Health Research Network (MHRN) is playing in the North East of England; with emphasis on their unique position to network with interested parties, for example service users, carers, academics, clinicians, NHS Trust Research and Development departments and universities.

The poster will present information gathered from a Service User and Carer Forum, held in 2001. Delegates were asked to express their opinions about:

• how they would like to get involved in research on a practical level
• the barriers they perceived to their involvement
• how these barriers might be overcome.

The poster will illustrate how this information was used to inform and generate a strategy for increasing capacity for authentic PPI in Mental Health research. One direct outcome of the strategy is highlighted: a service user and carer working on the group’s successful bid to produce the MHRN’s National Good Practice Guidelines for the Recruitment and Involvement of Service User and Carer Researchers.

Issues raised for discussion while generating the strategy included:

• The differences between ‘involvement’ and ‘participation’ in research
• Is collaboration the way forward for PPI in Mental Health research?

Abstract: The Leeds Musculoskeletal Biomedical Research Unit (LMBRU) opened at Chapel Allerton Hospital in 2009, the first research unit within the Leeds Trust. Funded from the NIHR, the LMBRU translates musculoskeletal research into improving patient care.

The LMBRU PPI group started in early 2010 and covers a wide area of involvement: one of most successful initiatives is the ‘Meet the Researcher’ meetings, held every two months. Researchers discuss their research on musculoskeletal disease and answer questions. Meeting topics are shaped by the group and patients are actively encouraged to develop potential topics with the researchers.

The patients’ viewpoint on the research we are doing and planning in the future is integral to successful research in the future. The group provide valuable and insightful feedback and are helping to positively change the researchers’ approach.

A high proportion of our members volunteer to be involved in our research projects, including as representatives on steering committees or giving feedback on patient information leaflets.

The LMBRU PPI Group consists of patients and members of the public interested in arthritis and research. Their enthusiasm, interest and appreciation are inspiring and we have been successful in creating integrated and visible patient and public involvement.