HANA Fair Processing Statement

HANA the National Head and Neck Cancer Audit – Information for Patients

Background

Clinical audits can provide an excellent way of improving the patient experience. Audits enable hospitals to monitor the standard of care received and record information on treatment. All data collected is subject to strict rules of confidentiality so patients do not need to worry about it getting into the wrong hands. Clinical audit is a continuous process of looking at the care provided and asks:

  • What should we be doing?
  • Are we doing it?
  • How can we improve?

Audits can be used to assess various aspects of patient care including:

  • Structure – such as the availability of on-call consultants to deal with post-operative problems
  • Process – such as whether a mouth cancer operation took place on the planned date
  • Outcome – such as the number of cancer patients who remain disease free for 5 years

If an audit asks the right questions the data collected can also be used as a research database providing a valuable resource for researchers that will inform best practice in the future. It can answer important questions such as:

  • What treatment works best?
  • How can we improve a patient’s quality of life?
  • Can we assess the risks of a particular treatment more accurately?

What is HANA?

HANA is the new National Head and Neck Cancer Audit for England and Wales. It aims to improve the quality of services and the outcomes achieved for patients. A team of surgeons, oncologists, dentists, nutritionists, speech and language specialists and cancer audit experts will develop and manage HANA. HANA will collect information about the diagnosis, management and treatment of every patient newly diagnosed with head and neck cancer, and their outcomes. The findings from HANA will contribute to changes in clinical practice ensuring that patients receive the best care possible and experience an improved quality of life.

Who manages HANA?

In July 2015 the Healthcare Quality Improvement Partnership awarded the National Head and Neck Cancer Audit contract to the charity Saving Faces – the Facial Surgery Research Foundation. HANA is part of the Patient Outcomes Programme (NCAPOP) and has been developed in partnership with the British Association of Head and Neck Oncologists (BAHNO) and a team of head and neck cancer and audit specialists.

The previous National Head and Neck Cancer Audit, DAHNO ran for 10 years and collected much valuable information relating to the care pathway. DAHNO asked questions like “did the patient see a speech and language therapist, a nutritionist and a clinical nurse specialist before treatment”, but it did not focus on outcomes.

Initially there will be a period of transition to allow time for the transfer of the information collected by DAHNO, to HANA.

What does HANA measure?

HANA will collect information from all hospitals within England and Wales that diagnose and treat patients with cancer of the larynx and oral cavity. This will allow us to assess the quality of care relating to:

  • Service delivery and organisation
  • Characteristics of newly-diagnosed head and neck cancer
  • How the cancer was detected and the referral pathway
  • Diagnosis, staging and planning of initial treatment
  • Treatments received
  • Complications of treatment
  • Overall and disease-free survival
  • The causes of delay in the treatment pathway

How is HANA data processed?

The hospital trust providing your care will send your information to Dendrite Clinical Systems Ltd electronically using secure data transfer methods.

Dendrite will act as guardians for your data and will store it securely. They may link HANA data to other NHS databases held by HSCIC and Public Health England. These databases hold patient information relating to hospital stays, radiotherapy given, chemotherapy given and cancer survival. Your name, date of birth and NHS number will be used to link HANA to the NHS databases. The linked information will help us to check whether HANA data is accurate. Data linkage will also provide information that will help us to improve our understanding about treatment choices and how best they can be combined to benefit patient care and survival.

Once a year Dendrite will combine the information from individual hospitals with data from other parts of England and Wales. They will process the data and organise it by region, hospital trust and consultant. They will then remove your name, date of birth, NHS number and any other information that could be used to identify you. Dendrite will work with Saving Faces to produce an annual HANA reports and local action plans. HANA results at regional, hospital trust and consultant levels will be compared with each other, and also with national standards of care for patients with head and neck cancer which have been set out by NICE (The National Institute for Health and Care Excellence) and BAHNO.

Who will benefit from HANA data?

HANA Stakeholders – staff, patients, carers, managers and the public will use HANA reports to assess the quality of care provided. They will also be able to see how closely local practice aligns to NICE and BAHNO guidelines. Saving Faces will publish the HANA reports in 2017 and annually thereafter. This will enable stakeholders to check progress and assess what improvements have been made. We will produce guidance and best practice examples for hospitals and trusts to help them achieve the recommendations of the Report. These will be presented at regional stakeholders’ meetings.

The new information collected by HANA will also help to define, add to and refine existing quality standards.

HANA data may be shared for research purposes within the European Economic Area in a form that will not identify individual patients. The research will always be in line with the overall purpose of the audit aims, for example:

  • Defining audit standards
  • Publishing papers in medical journals to provide information about the best standards of care
  • Providing information for public health

Consultant Treatment Outcomes

Information about individual consultants will be taken from the DAHNO and HANA audits and published each year. You will be able look at their results for a range of operations and treatments to help you make decisions about your care. You will also be able to see how many times each consultant has performed a particular procedure. The data will show where the clinical outcomes for each consultant sit against the national average. Where results differ significantly from the national average, there may well be good reason, and you can discuss this with your GP and/or surgeon. Click on the NHS Choices website for more details.

How reliable is the HANA data?

As HANA is a large national audit some items are bound to be inaccurate or missing. Linking your data with information in other NHS databases will help us to check whether the data provided by each hospital is complete and accurate.

Once your information has been added to HANA only your clinicians will be able to access, check and change it. Dendrite will keep a record of all changes that are made.

How we keep your information safe?

Data protection and privacy is an important part of HANA so no individual patient names can be identified in the results.

Saving Faces and Dendrite will make sure the data collected is subject to strict rules of confidentiality as laid down by Acts of Parliament, including the Data Protection Act 1998 and the Health and Social Care Act 2001. The national clinical cancer audits have been given permission to use and store patient data in accordance with these strict regulations.

How long will we keep your information?

By collecting a large amount of information, it is easier to identify the most effective treatments, which can benefit patients. This can change cancer care so that in future patients will survive longer and have a better quality of life after treatment.

We will retain the HANA data for a period of at least 10 years to enable us to collect, assess and report on the complications and outcomes of treatments.

Can I opt out of HANA?

National clinical audit is most effective when it has information from as many patients as possible. The HANA audit uses some information that is routinely collected by the National Cancer Registration and Analysis Service. We also collect some specific HANA information to allow us to assess the quality of care delivered to head and neck cancer patients. If you do not want this HANA specific information to be used, please tell the people who are treating you. It is possible that some HANA information may already have been transferred to Dendrite. When the people who are treating you inform Dendrite about your decision, Dendrite will make sure that any HANA specific information that can be removed from the audit database is destroyed. This will not affect your treatment in any way.

Contact details

If you have any general questions about this audit please contact hana@savingfaces.co.uk