Policy Bite from Amanda Howe - data collection
Data collection from primary care – difficult, dangerous, and definitely needed!
The U.K. has had a stormy time recently – large parts of southern England are flooded: but today’s headlines are awash with a different issue – the public response to our government’s attempt to collect routine data from general practice records. This plan was part of the recent national health reforms, and makes routine the collection of anonymised ‘patient level’ data (age, sex, locality, attendance, medical problems…) unless the patient chooses to opt out.
The rationale is to allow a full population profile for service planning, quality assurance, and new research. The data is meant to be held securely, and anyone who wishes to utilise the data outside the core NHS staff working with the database has to apply to a committee and assure both legitimate purpose and appropriate data safeguards.
WONCA and its family medicine organizations have championed the need for our members to collect data on what they do. With others from WONCA, I recently visited Myanmar, where their GP Society is trying to create a College of Family Physicians with a properly accredited postgraduate qualification. I saw clinics where doctors were keeping personal written records, allowing continuity of information over time – but there was no way of collating that information, to audit care for particular groups. The advent of computerised records in some countries facilitates our ability to quality assure care, and also to investigate health needs – for example, which women in a population are not attending for well women checks? As a researcher myself, I am delighted that I can get a list of people to receive invites for studies at the touch of a button, rather than spending hours wading through paper records to identify suitable patients. And it is clear that FM must be able to show what we do for politicians to believe we are core to the system – numbers of consultations, effective outcomes, cost effectiveness measures all need data to demonstrate impact.
So why the storm? Three reasons – concern about confidentiality, misunderstanding of the value of the data, but also concern about the choices (or lack of them) for patients. For example, you cannot opt out of your data being released to commercial providers if their request is deemed legitimate.
So if you are happy for the NHS and university researchers to use the data, but not for insurance companies or pharmaceutical companies, you cannot specify this. This was debated when the issue first passed into law, but patients only began to understand when the deadline approached for the opt-out choice to be made. People also really worry about confidentiality since the Edward Snowden affair, and there are misunderstandings about technical aspects around anonymisation.
Why would this matter to other countries, especially those struggling to provide core services in resource – poor situations? I think because, as FM practitioners, we all need to commit to collecting data on what we do, in order to make a difference. But we must explain to the patients why we do this, and who gets the data: make sure they support us in this effort: and make sure that their data cannot be accessed by anyone who will not use it properly. This applies to research and pharmaceutical studies – managing the ethics of patient consent, data protection, and data quality are all part of high quality practice, and our patients trust us to negotiate this with third parties, including governments. The storm today in the U.K. has the potential to damage the relationship between GPs and patients, and between government and the people; learn from it.