As part of our Electronic Health Records (EHRs) project we carried out a large scale cross-sectional survey recruiting 5331 patients and members of the public from 16 primary and secondary care sites in West London (2011). In light of recent policy developments with the care.data GP extraction service we provide here a summary of key findings while preparing publications in peer-reviewed journals (we have already published the study protocol and some high level results):
Access preferences for different user groups
Patient and public preferences for access to EHRs by different user groups varied depending on whether records would include personal identifiers.
As our research project on electronic health records is soon coming to an end, we have created an animation video to document our project journey and to communicate some of our key findings. With this animation we aim to feed back to the people who took part in our research and open up the discussion to anyone else who might be interested in our project. At the end of the animation you can find a link to a collection of materials providing further information on health data sharing in the NHS and beyond (also available here).
We have published a new paper in the Journal of Medical Internet Research. Below is the abstract:
Background: The development and implementation of electronic health records (EHRs) remains an international challenge. Better understanding of patient and public attitudes and the factors that influence overall levels of support toward EHRs is needed to inform policy.
Objective: To explore patient and public attitudes toward integrated EHRs used simultaneously for health care provision, planning and policy, and health research.
Methods: Cross-sectional questionnaire survey administered to patients and members of the public who were recruited from a stratified cluster random sample of 8 outpatient clinics of a major teaching hospital and 8 general practices in London (United Kingdom).
In the past months we carried out several focus groups, interviews and workshops with patients and members of the public to better understand their hopes and fears in relation to integrated Electronic Health Records (EHRs). The data collection phase has now finished and we would like to thank all our participants for devoting their time. We enjoyed talking to so many people and listening to their views and experiences. We will be updating this blog soon with the outcomes of our research!
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.
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?
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?
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.
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.