We would like to invite you to participate in our research study on Electronic Health Records. The study looks at the views of patients and members of the public about using electronic records and computer databases for healthcare, research and policy making.
If you decide to take part we will arrange for you to join a focus group discussion with 6-8 other people. This will last for about 1.5 hours and will take place at a convenient location. All participants will receive a £30 gift voucher, as reimbursement of expenses and a token of appreciation for your contribution to the research. We will also provide refreshments.
For more details or to participate in the study, please contact Chrysanthi Papoutsi:
Our workshop on Electronic Health Records at the end of last month was very successful. All participants engaged enthusiastically in debating the benefits and problems of Electronic Health Records and we learned a lot from these discussions. We would like to take this opportunity to thank everyone for sharing their experience and insights. This workshop has generated a wealth of ideas and interesting contradictions to explore further in our focus groups with patients, carers, parents and members of the public.
For now, we would like to open up this discussion to an online audience:
What do you think about the opportunities and challenges of ‘cradle to grave’ Electronic Health Records?
How would you prefer your health information to be accessed and shared in the NHS?
Please leave a comment to let us know what you think. We are grateful to two of our participants who agreed to kick-start this discussion by summarising their own views in a short video interview taken after the workshop. Please also see below to find out more about them in the introductions they provided us.
Dr Cecily Morrison joined Imperial College London in 2012 as the Teaching Fellow in eHealth to lead the development of a new masters course in this area at the School of Public Health. She holds a PhD in Human-Computer Interaction (Computer Science) from the University of Cambridge and has carried out a range of research into the uses of clinical information systems in critical care. Topics span the effect of clinical information systems on multidisciplinary interaction to understanding the way units use their systems for innovation and audit.
Mr Sudhir Shah is a carer and also patient (like all of us). He has been involved with various carer forums, i.e. Harrow Carers group and Carers UK, and is also a member of Central North West London Trust (CNWL) for mental health. In the last 2 years he has participated in NIHR CLAHRC for Northwest London projects (AQIP – Antibiotic Quality Improvement) and workshops (“The Effective Patient and Community Representative”). Previously he worked in the telecommunications and IT sector.
Please join us for an exciting session to debate the opportunities and problems with Electronic Health Records for healthcare, research and policy purposes.
In this interactive workshop we aim to bring people together in exploring open questions around electronic records and databases in the healthcare system. We would like to hear from a range of stakeholders drawing on their real life experiences as patients or carers, healthcare staff, researchers and policy-makers:
What challenges have you faced with sharing and restricting access to your own health information or to health information you manage as part of your professional role?
What benefits or problems do you think arise from the use of electronic records and databases?
Are there any ways that electronic records can make your personal or professional experience with the healthcare system more positive and why are these not realised?
Lunch will be provided before the session and refreshments will follow to allow further opportunities for networking.
This workshop is part of a Wellcome Trust funded research project on patient and public perceptions around Electronic Health Records with the aim to inform thinking and produce policy-relevant findings. The project is led by NIHR CLAHRC for Northwest London and carried out in collaboration with the Department of Primary Care and Public Health at Imperial College London and the London School of Hygiene and Tropical Medicine.
For further details or to register for the Electronic Health Records session, please contact Chrysanthi Papoutsi: c.papoutsi@imperial.ac.uk
If you attend the full-day event you will be eligible for 5 Continuing Professional Development (CPD) points issued by the Royal College of Physicians, London. To register for the full-day event, please follow this link: https://www.eventsforce.net/clahrc_autumncld2012
The study protocol for the first, quantitative phase of the project has been published in BMC Medical Informatics & Decision Making. Below is the abstract:
Background: Immediate access to patients’ complete health records via electronic databases could improve healthcare and facilitate health research. However, the possible benefits of a national electronic health records (EHR) system must be balanced against public concerns about data security and personal privacy. Successful development of EHR requires better understanding of the views of the public and those most affected by EHR: users of the National Health Service. This study aims to explore the correlation between personal healthcare experience (including number of healthcare contacts and number and type of longer term conditions) and views relating to development of EHR for healthcare, health services planning and policy and health research.
Methods: A multi-site cross-sectional self-complete questionnaire designed and piloted for use in waiting rooms was administered to patients from randomly selected outpatients’ clinics at a university teaching hospital (431 beds) and general practice surgeries from the four primary care trusts within the catchment area of the hospital. All patients entering the selected outpatients clinics and general practice surgeries were invited to take part in the survey during August-September 2011. Statistical analyses will be conducted using descriptive techniques to present respondents’ overall views about electronic health records and logistic regression to explore associations between these views and participants’ personal circumstances, experiences, sociodemographics and more specific views about electronic health records.
Discussion: The study design and implementation were successful, resulting in unusually high response rates and overall recruitment (85.5%, 5336 responses). Rates for face-to-face recruitment in previous work are variable, but typically lower (mean 76.7%, SD 20). We discuss details of how we collected the data to provide insight into how we obtained this unusually high response rate.
Full citation: Luchenski, S., Balasanthiran, A., Marston, C., Sasaki, K., Majeed, A., Bell, D., & Reed, J. (2012). Survey of patient and public perceptions of electronic health records for healthcare, policy and research: Study protocol. BMC Medical Informatics and Decision Making, 12, 40.
Although wider use of health technologies can contribute to the improvement of public health and individual patient outcomes, increasing access to patient health information brings challenges. There is a balance to be struck between protecting individual privacy, for instance, and gaining benefits from additional data becoming available for healthcare research.
In this blog we will be documenting the progress of our research project looking at patient and public perceptions around Electronic Health Records (EHRs) used for care, research and policy-making purposes. We would like to share our findings, thoughts and plans with the public and invite feedback and comments from patients, health professionals, researchers, policy-makers and other interested parties.
This research is being conducted by a team led by Professor Derek Bell and Dr Julie Reed in the Department of Medicine at Imperial College London, based at NIHR CLAHRC for Northwest London at Chelsea and Westminster Hospital. The project is funded by the Wellcome Trust and involves collaboration with Professor Azeem Majeed in the Department of Primary Care and Public Health at Imperial College London and Dr Cicely Marston at the London School of Hygiene and Tropical Medicine.
We are very excited about completing data collection for the first phase of the project, which included a large-scale survey with over 5000 patients and members of the public in Northwest London. We are currently analysing the data on people’s views around EHRs and will post our work here soon.
The second qualitative phase of the project starts in September and we have planned workshops and focus groups where we aim to apply participatory methodologies for the study of EHRs. Our goal is to produce a strong empirical base concerning the ways people make sense of EHRs and to help patients, health professionals, researchers and policy-makers engage in meaningful dialogue around their benefits and risks.
In the third and final phase of the project we are aiming to engage with the public in order to co-produce a range of information and educational materials and activities that address people’s hopes and fears in relation to EHRs.
For more information or questions, please contact:
