Archives: Conference
Redefining policy and interventions from the point of view of the elderly patient with cancer
Abstract: Policymakers want their policy to be effective. An effective policy is one written with the target group, and not about the target group. In the case of elderly cancer patients, a three-fold vulnerability (due to ageing, due to cancer and due to comorbidity) leads to their underrepresentation in research, which in turn translates into …
Views of Individuals Concerning Research (VOICE): An interpretative phenomenological analysis
Abstract: There is a clear need for research institutions to develop opportunities for patient and public involvement (PPI) within their research themes in order to: provide high quality evidence in areas of importance to patients and the public meet the recommendations of governance guidelines meet the requirements of funding providers. However, there is a lack …
Using James Lind Alliance methods in setting mesothelioma research priorities
Abstract: The theme of our poster will be James Lind Alliance (JLA) methods, using the example of the Mesothelioma Priority Setting Partnership as an illustration. We will explain how JLA methods invite patients, carers and clinicians to collaborate through steering groups and prioritisation processes and how this adds to the impact of the outcomes. We …
Patient and public involvement in systematic reviews: Why bother? What’s the way forward?
Abstract: Systematic reviews use clear methods to identify and summarise what is known about a health or social care topic. By ‘appraising’ research, these reviews also tell us how much faith we can have in the knowledge presented. These reviews used to just be about the effectiveness of a drug or medical procedure, but are …
The depression puzzle
Abstract: With an estimated one in four people experiencing depression in their lives, solving the puzzle of how to understand and treat this debilitating illness becomes ever more pressing. In October 2013 members of the Lived Experience Group (LEG) at the Mood Disorders Centre (MDC) of Exeter University hosted a Public Open Day, aimed at …
Understanding patient and public involvement in health services research: From theoretical framework to practical workshop
Abstract: Gibson et al. (2012) recently developed a theoretical framework for understanding and planning patient and public involvement in health services research. This presentation will discuss the process by which researchers worked collaboratively with three patient and public involvement groups to turn this theory into a practical workshop. In these workshops, individual group members were …
We’re all over the place!
Abstract: How can service users based in different locations successfully write and publish their research? When groups of service users successfully conduct research, they obviously wish to disseminate their results as widely as possible – usually by publishing in a suitable journal. When group members are based over a wide geographical area this may not …
The role of social media in gathering data: An example from parents of children with the chronic condition Juvenile Idiopathic Arthritis (JIA)
Abstract: Key Issue It is widely recognised that it is important to involve consumers in shaping research priorities and care. Based on consumer led research with parents of children with Juvenile Idiopathic Arthritis (JIA) we show that a variety of methods are needed to obtain a wide collective voice. For example, the role of Facebook, …
Issues, needs and concerns of women with breast cancer in rural areas
Abstract: Rationale and aims Conducted by members of Breast Cancer Care’s Service User Research Partnership (SURP) this study aimed to identify the needs and concerns of women who had completed treatment for primary breast cancer living in remote and rural (R&R) areas of Scotland. Methods In 2013, a mixed method study was undertaken involving a …
The changing landscape of a clinical trials unit: Working towards making PPI part of the culture of our organisation
Abstract: The Medical Research Council MRC Clinical Trials Unit (MRC CTU) at University College Longon (UCL) develops, runs and reports clinical trials and other research studies in areas including cancer, HIV and other infectious diseases. The MRC CTU Patient and Public Involvement (PPI) Group, which includes staff and patient representatives as members, has been working …
Stronger together: Collective endeavours of a cleft and research organisation to promote the role of young people affected by a cleft in research
Abstract: The Cleft Lip and Palate Association (CLAPA) is a national charity that supports families and individuals affected by a cleft. It has been working closely with the Cleft Collective over the past two years to promote the active involvement of its members in research. The Cleft Collective is the world’s largest cleft lip and …
Future directions for learning and development for researchers and patient and public involvement representatives in the East of England
Abstract: Despite the availability of patient and public involvement (PPI) in research training courses and resources, both researchers and PPI representatives (PPIRs) cite training as an unmet need in the East of England (EoE). We therefore undertook a survey of researchers and PPIRs in the EoE to find out what participants thought were the learning …
