What’s next for the NHS GP data collection program?


Credits: Chokniti Khongchum on AIX

Today it was to mark the start of data collection through the General Practice Data (GPDPR) program for planning and research.

According to the organization’s CEO, the date itself was initially canceled to allow NHS Digital to “speak to patients, doctors, medical charities, etc. to further strengthen the plan.” Two months behind schedule. Simon Bolton.

The plan has already been the subject of much concern and criticism, with the British Medical Association and the Royal College of General Practical Association “jointly rethinking your position … and taking immediate action to direct the public”. I asked him to wake him up. Information campaign ”.

Even this action was not sufficient to ensure that the GPDPR was able to proceed as planned.

Instead, in a letter sent to the GP on July 19, Primary Care Minister Jo Churchill announced that the “specific start date for data collection” was gone. Digital NHS Public technology It is still true.

“Since the program has been suspended, we are developing engagement and communication campaigns aimed at recognizing and understanding the healthcare system and patients’ plans and making informed choices. “
Minister of Primary Care Jo Churchill

Churchill’s letter reflects an earlier statement that the NHS wanted to “step up its plans” to roll out the program.

The plan is to collect patient data from GPs across the UK on a daily basis, as planned. This includes diagnosis, symptoms, observations, test results, medications, allergies, immunity, referrals, reminders, appointment information and gender, ethnicity and location. sexual orientation related to the physical, mental and sexual health of the patient. Contains data and information about. About the staff who treated the patient.

This data is pseudonymized and does not include names or addresses. However, it excludes postcode information which is collected “in a uniquely encoded format”.

Data collected in a large central repository represents a “broader general purpose collection” than data currently collected through existing retrieval services in general practice. The aim is that the frequency and extent of data collection “allow faster access to pseudonymized patient data for planners and researchers”.

Critics of this plan focus on what is characterized by a lack of communication: what the existence of the GDPR and what its introduction means for patients, in particular the deadline initially set. I am. This forced the patient to withdraw.

The deadline of September 1 for the opt-out has been abolished. Patients will be able to opt out at any time, and NHS Digital will ‘create a technical means’ for data that has already been uploaded to be deleted if the patient signs up for a Type 1 opt-out.

These exclusions essentially prevent the sharing of data from the patient’s GP records beyond the scope of surgery for reasons other than their own care.

Type 2 opt-outs prevent patients from sharing their data with non-NHS organizations.

Plans to ‘abolish’ the broader Type 1 opt-out have also been delayed for 12 months, “will not be implemented without consultation with the RCGP, BMA and the National Data Guardian,” Churchill said .

According to Churchill, the opt-out system is one of the four main areas of work and must meet certain conditions before it can start collecting data.

These conditions include allowing the system to delete data that has already been uploaded, creating a “trustworthy research environment” within NHS Digital, and educating more patients about the program by through communication campaigns. Includes removal of unsubscribe backlog to be processed.

Once a credible research environment is established, it becomes the sole means of controlled access to NHS Digital GP data, “unless the individual consents to access the data, such as written consent, security of NHS. Prevent copying or transmission of information outside the environment for research purposes. “

“This is intended to give general practitioners and patients a very high degree of confidence that their data is safe and that their privacy is protected,” Churchill said.

Communication campaigns take place in four phases: consultation; Demonstration; and delivery.

“Because the program has been suspended, we are developing engagement and communication campaigns aimed at recognizing and understanding the health system and patients’ projects and making informed choices. »Said the Minister. “The general public sees and trusts general medicine correctly. Through a centrally-run communication campaign, we strive to ensure that the introduction of this collection does not place an additional burden on the practice, with a clear message.

“Simplify the process”
Communication has traditionally focused on working with the GP to disseminate information about data collection plans.

Sir Bethel, Minister of Innovation, one of Churchill’s colleagues at the Department of Health and Human Services, answered a parliamentary question from LDP peer Sir Strassberger last month, and the engagement campaign also includes a letter to citizens. Clarified that there is a possibility. I will explain the program to you.

“We haven’t ruled out letters to patients,” he said. “But some fear that this is not the most effective way to communicate on this subject. Although discussions of patient letters are ongoing, NHS Digital initially worked closely with experts in general medicine. We were asked to work together to ensure that the practice was supported in informing patients, while recognizing the need to protect the practice of general practitioners from the added burden. “

Bethel added, “Patients can sign up for national data opt-outs by mail, phone, or email, or contact the GP to sign up for Type 1 opt-outs. Consider ways to make this process easier. for patients and general practitioners. Make.”

Despite the delays and obstacles, the government still seems eager to convince patients that the program will benefit them.

Churchill referred to the hard-hitting headlines of the recently released health and social services data strategy in concluding a letter to doctors across the country.

“Data saves lives.

She added: “The deployment of the Covid-19 vaccine could not have been achieved without patient data. The steroid dexamethasone kills a third of the most vulnerable Covid-19 patients, the lives of those who use a ventilator. The discovery that he could be saved would not have been possible without patient data from a UK GP. This idea continues to save the lives of a million people around the world.

“This is why this program is so important.

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