We have been involved in a range of patient and public engagement activities in 2015. Some recent highlights include:
1st March 2016 2nd UCL FESTIVAL FOR DIGITAL HEALTH
Data Saves Lives: Using Health Record Data – from Discovery to Public Health (the Farr Institute, London)
This event, open to the research and clinical community and the general public, will feature some of the best examples of how our research using electronic health records has an impact on patient outcomes and service delivery. There will be a public engagement workshop, co-chaired by a lay member of the public and a researcher, developed to deepen understanding of missing information in the electronic health record from both the patient and the researcher point of view. The full programme is available here.
Details of our series of talks and events for the public and our schools engagement programme for the coming year will be published here soon.
- Research Open Day for the Public, June 2015
The Open Day held at University College Hospital London attracted hundreds of visitors from the local community, patient groups and schools. With over 40 interactive displays, researchers from the Farr Institute joined other clinicians and scientists to demonstrate how our research is changing patient care. We used interactive “data visualisations” to show the public what kind of data from GPs and hospitals we use in our research, what data look like to researchers, and how researchers are using the data. We also demonstrated an interactive risk calculator for clinicians to guide treatment decisions for patients with coronary disease. Read more about this successful annual event here.
- Patient and public engagement at the Farr Institute International conference in St Andrews, August 2015
434 delegates from across the world were in attendance at the conference, where we ran an exciting series of events including:
- A keynote lecture “Involvement from Start to Finish” was delivered by Anne McKenzie, who leads and manages the joint Consumer and Community Participation Program at the School of Population Health and Telethon Institute for Child Health Research at the University of Western Australia. Anne’s lecture can be viewed here.
- A workshop (“Great expectations: researchers and the public working together”) delivered by members of the four Farr UK patient and public engagement Groups to researchers outlined ideas for joint public engagement working across Farr UK and for joint working with researchers.
Farr Summer School students were introduced to key concepts of data visualisation for presenting research results to a general audience and how to conduct effective patient and public involvement through talks and structured discussions with lay members of the public.
- Practical, interactive and hands on teaching sessions were delivered by researchers to schoolchildren aged 16-18 years from two local schools on big data science and data analysis. The sessions were designed to inspire and encourage the young students and get them involved in some of the basic concepts researchers face when using data.
- Patient and the public involevement in setting the research agenda for key clinical themes
- Throat (ENT), Hearing and Balance care, uniquely shaped by the views of patients, carers, healthcare professionals, researchers and other stakeholders. In September 2015, key groups including members of the public got together at the GENERATE consensus conference in London to formulate a strategy for cross-collaborative, high-value research in ENT hearing and balance.
- Cancer Frontiers Meeting: Using UK Cancer Data for Maximum Research Impact and Patient Benefit There is an enormous potential for work on cancer health informatics within the UK. The rich and extensive datasets that exist on cancer patients (in both health service and research settings) make this an exciting area for expansion with the prospect of developing world class research programmes. In December 2015, patients and lay members of the public will be brought together with experts within the cancer research and clinical communities in the UK to outline the potential of such datasets and how the Farr Institute can add value to the future research effort in this field.
Public information sessions and debate
Examples of our public seminars and debates have included the topics “Cardiovascular disease – how can our genes be used to improve health?” (Hatter Cardiovascular Institute, January 2015) and “Ownership and access to personal (genetic) information in future healthcare” (London Olympia, October 2015).