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Patients to control their health records, says government

Ian Grant

Patients will become responsible for their own health care records under plans unveiled in a white paper published by the government.

Headlined "An information revolution", the white paper promised to give patients an accurate, highly standardised electronic health care record that would "liberate" health and adult social care information from a "closed, bureaucratic system".

Health minister Andrew Lansley said the main principle was that there was "no decision about me without me".

A fundamental idea was that patients are responsible for their own health care record, and will be able to choose to how much to share and with whom. Patients would have direct electronic access to their health care record, which would "follow" them through the NHS.

The government was committed to moving to information that enabled patients and service users to be in clear control of their care. Patients and service users would become "active participants in their care" rather than passive recipients.

Chairman of BCS Health Matthew Swindells welcomed the move to greater transparency and openness. "This is about an information revolution, not an IT revolution, and the NHS would be very mistaken to think otherwise," he said.

Public scrutiny of the results data would lead to a speedier improvement in the NHS's data quality, he said. Taking away performance targets without making public the results of care would hand back control to medical bureaucracy, he said.

Giving patients control of their care records would enable them to take greater control of their care, the government said. Patients would be free to choose their doctors and, with advice, which procedures. This goal emerged from 5,400 responses to a consultation on how patients wished to be treated, it said.

Swindells said the proposals were not in conflict with the former National Programme for IT's idea that each patient would have a centrally accessible patient care record. What was different was the degree of control exercised by the patient.

The new system would also extend maternity choice to include pre-conception, ante-natal, and post-natal care, while there would be more choice of treatment and provider in mental health services. It would also help patients choose where to die, including at home.

Overall, this would improve patient and public healthcare outcomes, innovation and use of resources, said Lansley.

A key issue was to ensure that basic data met necessary standards. These could be based on the professional record keeping standards developed by the Royal College of Physicians, the government said.

It was vital to use a unique identifier such as the NHS number to track the patient and his or her care across a variety of conditions and care givers. "The NHS number needs to become as important to care providers as the national insurance number is to employers and employees," Lansley said.

"Interoperability" allowed information to move "freely and meaningfully" through the system. There were clear benefits to defining standards that supported sharing between systems on a national basis, he said.

"We must start by ensuring that accurate data is recorded at the point of giving care, as this forms the basis of information used for so many other purposes across our health and care system," Lansley said.

Lansley also proposed to standardise the terminology used to describe symptoms and treatments. Terminologies were collections of definitions of anatomy, procedures, diagnoses, tests, medications, and so forth that are maintained and can be loaded into multiple record systems, he said.

Swindells said even if the information contained a lot of medical jargon, it would allow the patient to ask better questions. Doctors were already making their referral letters more intelligible to lay people because they were receiving copies, he said.

Work carried out with users by NHS Choices showed people might be interested in:

• Their own health status or condition

• Suitable medicines, treatments, and any risks, benefits and side effects

• Clinical outcomes and success rates, such as readmission or mortality rates

• Other indicators of quality and performance, such as infection rates

• The availability of appropriate treatment or care in different locations

• Average and maximum expected waiting times for different aspects of their care or treatment

• The track record, expertise and experience of clinicians or other professionals providing their care or treatment

• For those with multiple care needs, how their package of care will be co-ordinated

• The experiences of other patients, friends and relatives

• The experiences of staff in the organisation providing their care

• The views and advice of their GP or other care professionals

• The care environment, particularly facilities, food and catering, and cleanliness, and

• The convenience of services, such as location, accessibility by public transport or availability and cost of car parking.

Moreover, information would serve the patient or service user consultation with good clinical and professional practice rather than purely administrative and technical needs.


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