Abstract: This session would be of interest to anyone wanting to use film as a means of accessing the opinions and experiences of patients and the public and presenting these to a broader audience.

Personal experiences are of increasing importance in biomedical research. Accessing this qualitative information has traditionally been done through questionnaires, but filmmaking techniques offer a particularly sensitive way of gathering first-hand knowledge.

In this session we will present a number of different ways in which the NIHR Moorfields BRC has been using filmmaking techniques to involve patients and the public in various aspects of biomedical research.

Since 2010 the BRC has organised patient events at which attendees are given the opportunity to speak to camera about any issue they feel is important to them, including their experience of healthcare services and how low vision affects their lives. This opportunity has proved extremely popular and insightful and has prompted a much wider use of film in the work of the BRC.

Structured around short film extracts, this hour-long session will cover how film can be used:

• during patient events
• in patient generated projects
• to disseminate research projects
• as part of the research process itself

Through these approaches we will explore: the practicalities of organising filmed interviews, the importance of lighting and sound, cataloguing and managing an archive, possible uses of filmed material for communication, and the ethical responsibilities of filming.

Some of the participants who have been filmed will also be present on the day and we hope for plenty of discussion throughout.

Abstract:

• How inclusive is public involvement with children and young people? Who gets involved, and who doesn’t?
• How can we best involve a wide range of children and young people in health and social care research?

There is increasing interest in children and young people’s involvement in health, public health and social care research. In early 2013 People and Research West of England decided to create a forum for researchers involving children and young people in research and/or interested in public involvement with children and young people. This presentation will briefly explore some of the issues emerging from these discussions before giving the example of a study in which the presenters are currently supporting young people’s involvement:

The ‘Youth Social Behaviour and Network Therapy Study’ (YSBNT) is a 30 month project, funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme, which is adapting an intervention (way of delivering services) which was originally developed for adults, so that it can be used with young people using drug and alcohol services and their families. The study is also looking at how best to involve young people who don’t normally get involved in research, in this case young people who have experience of using drug and alcohol services. In this presentation we will explore what we are learning about involving young people who are not ‘the usual suspects’ from the perspective of the young people involved, the people supporting their involvement and the wider research team.

Abstract: INVOLVE recently undertook a project looking at the use of social media for public involvement in research. The project advisory group found that while there were resources on using social media for communication and engagement, there was less information avaiable on using social media for active public involvement in research.

In addition to conducting a scoping exercise, we consulted with relevant groups and held a Twitter chat on social media for public involvement. We also put out a call for people to get in touch if they had used social media for active public involvement in research. We interviewed nine people, and many others were in touch to express an interest in the area and share their thoughts with us.

Based on this work we developed a guidance document that includes the benefits and challenges of using social media to actively involve people, how to manage risks and consider ethical issues, top tips and things to think about before using social media for involvement in research. To complement the guidance we wrote up the interviews as real life examples of the use of social media for public involvement. These can be accessed and downloaded via the INVOLVE website

At the conference session we will be discussing the newly launched INVOLVE guidance document on use of social media for active public involvement in research. We will talk about how we developed the guidance and how we plan to keep it up to date as the use of social media continues to develop and raise new opportunities, challenges and ethical issues.

The session will use a hashtag so that others not physically present can also ask questions, and the discussion will be live tweeted.

Abstract; Evidence that patient and public involvement (PPI) makes a difference remains largely anecdotal and there are mounting calls for robust, critical evaluation. But how can we assess the impact of PPI, and should we assess it at all?

In this paper we explore and discuss the views of 38 patients, carers and members of the public regarding the impact of their involvement in research, whether and how it should be assessed. This was part of a wider interview study exploring their views and experiences of involvement in medical research. Five lay contributors were involved from the study outset and advised on sampling, recruitment, interview guide and themes emerging from the analysis.

Many participants were convinced that their involvement made a difference to research, particularly if they were involved from an early stage. Assessing the impact was considered important, however, it was agreed that finding meaningful ways to measure impact was difficult. Participants felt that impact was largely subjective and often difficult to isolate. They made various suggestions including:

• negative as well as positive impacts should be captured;
• tools to measure impact must be sensitive to the complexity of PPI;
• success rates with regard to funding, ethics committee approval and recruitment of participants could be measured;
• patients and the public should be involved in assessing the impact of PPI.

We present the full results and encourage audience members to discuss and debate the issues raised by participants. The findings will inform a new study aiming to assess the impact of PPI.

Abstract: HERO works with students, teachers and health professionals to investigate the best ways of getting health messages across to young people, communities, patients and their families. Active patient and public participation is a significant component of all HERO projects. This presentation will illustrate the different opportunities for stakeholder involvement showing how they can affect research design through to identifying new research areas, resulting in novel projects addressing the issues that are key. HERO works in partnership with clinical genetics providing a family and community facing service that enables us to bring research initiatives and developments to wider audiences and providing a route for the public to identify their own priorities for health research.

We will present an overview of the PPI in the projects and give the stakeholder perspective of being involved, how was it for them and what next? The aim will be to show that PPI is a resource and that the more perspectives we have the more barriers or issues will be raised early in the process resulting in relevant interventions and initiatives. Discussions will revolve around the participant’s perspective, the benefits of effective PPI and avoiding tokenism.

Abstract: The main theme of the poster will be ‘how to develop meaningful PPI to improve delivery on the Comprehensive Local Research Network (CLRN) network objectives’. This will include information about the ongoing work the CLRN are doing to identify and engage with patient groups within South London.

London (South) sees Patient and Public Involvement (PPI) as central to our effectiveness in recruiting patients to portfolio research studies and we hope to be a leader in exploring how meaningful PPI engagement can improve the delivery of research through recruitment not only to Time and Target but also to represent all groups in England’s population.

We will showcase information about the implementation of the London (South) CLRN Strategy and hope that attending this conference will be an excellent opportunity to meet with other networks and share ideas. We feel that a poster will be of extreme benefit and enable people to learn how London (South) CLRN are involved in PPI and share information and resources as well as examples of what works.

Abstract:

Theme or key issue: People of South Asian origin are four times more likely to develop type 2 diabetes mellitus (T2DM) than their non-South Asian counterparts. Adopting a healthy lifestyle is known to greatly reduce the risk of developing T2DM however many people find this difficult to do. We set out to design and test a South Asian community-informed way of supporting this group to adopt a healthier lifestyle.

Summary (including info about public involvement): First, we found out what people of South Asian origin knew about their risk of developing T2DM and what sociocultural factors would help or hinder their uptake of preventive lifestyle changes. We then developed a community-based lifestyle change intervention that would be led by South Asian volunteers, and a training course to teach them to both deliver the lifestyle intervention and collect research data on it.

What we hope people will learn: We will describe in detail our experience of including community members in the research process, and the lessons learned along the way.

The issues we will raise for discussion: Several aspects of this study warrant discussion, including the concept of volunteerism in the delivery of, rather than passive participation in, research.

Abstract: This presentation and poster will showcase the ways in which people with experience of dementia have supported a UK government initiative to prioritise and improve dementia research. Delegates will learn about innovative techniques to bring together personal experiences of dementia alongside the scientific expertise of dementia researchers. This will provide discussion on the important role that medical research charities can play together with the Department of Health and the research community. We will also share methods to facilitate the involvement of patient and carer experiences within large workshop events.

Alzheimer’s Society’s Research Network of over 220 carers and people with dementia provided pivotal support to the National Dementia Research Summit in 2009, a Ministerial advisory group and the National Institute of Health Research’s ‘Dementia Themed Call’. This included an innovative workshop that brought together 30 researchers and 40 Research Network volunteers. The workshop matched Research Network volunteers’ experiences with the topics of the researchers’ projects that were in development. Speed networking and focused discussions were facilitated to allow researchers to discuss their proposals with those who have relevant personal experience. This led to many offers of support from Alzheimer’s Society to facilitate public and patient involvement, including 13 applications with lay co-applicants.