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Consultation launched on wider use of patient information

The public and healthcare professionals are being encouraged to have their say on the use of patient information for research purposes as well as managing and planning care. (Published: 17 September 2008).

The sharing of patient information can help improve the well-being of the population through medical research, disease surveillance, screening, needs assessment and preventative activities.

The 12-week "Consultation on public, patients, and other 'interested parties' views on additional uses of patient data", is launched today, Wednesday 17 September, by NHS Connecting for Health (NHS CFH).

The consultation gives patients and the public the opportunity to input into the way the NHS uses their health information for these purposes and will explain the benefits, legal safeguards and practical steps available to meet confidentiality and ethical obligations.

  • Who should have access to patient data?
  • For what additional or secondary uses should data be used other than direct care?
  • What process should govern access when individual patients can or cannot be identified?
  • Who should control and manage access to the information?
  • What consent options and safeguards should there be for patients?
  • What concerns do people have about secondary uses and how can they best be addressed?

Whilst the NHS has always used patient information for planning and research purposes, the advent of new technology with the NHS Care Records Service offers new opportunities, with the electronic collection of clinical and patient data. The public consultation covers the use of patient information for uses such as:

  • Research into prevention and treatment of diseases
  • Improving public health
  • Managing and planning future health services
  • (Health) planning screening
  • Quality control (clinical audit)

Experts

Professor Sir Alex Markham


Professor Sir Alex Markham

Professor Sir Alex Markham, Professor of Medicine at the University of Leeds and Chair for the Research Capability Programme (RCP) said: "Health Research can potentially bring huge benefits for patients, improving the public's health and increasing our understanding and management of disease.

"With new Information Technology in the NHS there are new opportunities for the health research community to carry out their research more effectively, which will benefit us all.

"It is vitally important that patients and the public understand how their health information might be useful and feel confident that their confidentiality will be protected.

"Our conversations with patients suggest that the vast majority of them are willing to participate in medical research. It is essential that those who do not wish to do so have their wishes fully respected. This public consultation will give patients and the public the chance to input into this process."

Professor Michael Thick


Professor Michael Thick

Professor Michael Thick, Chief Clinical Officer for NHS CFH said: "Patients, as well as clinicians, must be involved in these crucial decisions about using clinical and patient data.

"The use of patient information for research and outcome measurements (i.e. use other than for direct patient care), has led to major benefits in health practice, such as the cure of duodenal ulcers, prevention of spina bifida, effective treatment of breast cancer and the carrying out of hip replacements.

"I urge people to participate in this consultation, which will provide the foundation for continuing research, which reduces risks to patients through, for example, the greater understanding of HIV prevention or the relationship between smoking and lung cancer.

"In England as in other countries, regulation of new medicine and other treatments relies on evidence of safety and efficacy from clinical trials.

"Trials and other research also provide fundamental evidence to inform guidance from the National Institute for health and Clinical Excellence (NICE). By giving us their views, people will be directly contributing to policies which are of huge importance to patients."

Julie Clifton


Julie Clifton

Julie Clifton, NHS CFH's Acting Director of Care Record Development, has experienced the benefits of improved care and treatment as a result of research on patient data from the patient's perspective.

Julie was diagnosed with cancer in 2006 and, following surgery, underwent seven months of chemotherapy and then radiotherapy. She has returned to work now, well again, and will be taking medication for the next five years to help prevent recurrence.

Julie said: "Research on patient data informed every element of my treatment, from the type of type of surgery I had, to the specific chemotherapy regime, the amount of radiotherapy and follow-up treatment.

"The research means that the treatment is much more tailored and personal to yourself as an individual patient and I'm sure that the treatment I was able to have was not available even five and certainly not 10 years ago. And 20 years ago I think it's likely that I would not have survived.

"I have now become involved with the National Cancer Research Informatics Initiative, which is trying to influence the way that research data from the NHS, charities, pharmaceutical companies and academics is shared."

NHS CFH will gather as wide a range of views and opinions as possible before publishing the outcome of the consultation later this year. The public can access the online consultation.

In addition, a number of workshops (Word 149Kb) are planned across England. NHS Connecting for Health (NHS CRS) came into being on 1 April 2005. It is supporting the NHS to introduce new IT systems and services.

Background

These new systems and services are together known as the National Programme for IT (NPfIT). They will help the NHS deliver better, safer care for patients by improving the way information is stored and shared.

The Care Record Guarantee for England sets out the commitment of the NHS in relation to patient records.

The consultation is being run by Tribal Consulting on behalf of NHS Connecting for Health.

Professor Michael Thick moved to NHS Connecting for Health as Medical Director for Choose and Book in 2005. He was appointed Chief Clinical Officer of NHS Connecting for Health in 2006. Please visit his biography.

Professor Sir Alex Markham is a professor of medicine at the University of Leeds and was previously Chief executive of Cancer Research UK. Please visit his full biography. Please visit his regular programme updates.

Peter Knight is the Programme Director of the RCP. Peter joined NHS CFH from his post as Managing Director at Winchester and Eastleigh NHS Trust, where he managed the implementation of one of the Cerner IT systems. Please visit his full biography.

Media contacts:

NHS CFH press office
(Systems & Services):
0207 004 1555
nhscfh.pressoffice@nhs.net.

Other NHS CFH enquiries

General NHS media enquiries:
Department of Health
press office:
0207 210 5221
www.dh.gov.uk.

NHS trusts and organisations: www.nhs.uk.