HANA Information for Patients
We need help from patients and members of the public to ensure that we are moving in the right direction.
The first Clinical Audit was believed to have been undertaken by Florence Nightingale, who was able to virtually eliminate patient mortality from British Army hospitals by measuring, monitoring and using her influence to implement sanitation measures in field hospitals! So, clinical audit is not new; it is something that many health professionals have done for a long time now as part of everyday practice.
But, HANA is different from many national audits in that it aims to monitor the whole patient pathway including complications and outcomes, which we think will make it even more valuable in terms of identifying and promoting best practice and improving patient care in the future.
We are very keen to continue to involve patients in the development and implementation of HANA. This should ensure that the audit is asking questions that are relevant to the people who are particularly affected by the service or issues under consideration. To this end, we are hoping to form a Patient Public Involvement (PPI) Group which will be invited to contribute throughout the audit, and I wondered whether you would be interested in participating. Your decision will not in any way impact on your care in the future so please do not feel under any pressure to say “yes”.
We anticipate that there will be many ways in which patients and members of the public will be able to contribute to HANA providing a different perspective, in terms of experience, interests, knowledge and expertise to that of the clinicians and audit managers. Once we have established the initial membership of our PPI group, it will very much be up to the members how to go forward, but one important aim will be to help to improve communication and engagement with patients.
We hope to have a planning meeting soon, probably in London, during which attendees will be able to share their ideas and thoughts regarding the purpose of the HANA PPI group and the roles and responsibilities of its members. Anyone who attends will, of course, be compensated for their travel expenses and time. If you are unable to attend this meeting, there will be other opportunities for you to contribute by completing surveys, reviewing audit documentation or attending public events such as the National HANA Stakeholder day, which we are planning to hold later this year.
If you would like to join this group, please email firstname.lastname@example.org for further information.
We are also seeking a lay member to join the HANA Steering Group which will meet quarterly with members of the audit team and specialists. If you are interested in joining this second group, please let us know and we will send you an Expression of Interest form.
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FAQ Information for Patients
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?
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.
HANA has been developed in partnership with the British Association of Head and Neck Oncologists (BAHNO) and a team of leading head and neck cancer and audit specialists. The previous National Head and Neck Cancer Audit, DAHNO ran for 10 years until 2014 and collected much valuable information relating to the care pathway. This information has now been transferred to 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. The commissioning arrangements for HANA are changing again in May 2017. HANA will continue as a national audit, but will be funded Saving Faces who will manage the audit with input from BAHNO and other cancer and audit experts.
HANA will collect information from all hospitals within England and Wales that diagnose and treat patients with cancer of the larynx and oral cavity. HANA will focus on the quality of care delivered and patient outcomes and aims to assess:
- 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
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.
When personal identifiers are no longer needed for patient tracking they will be permanently removed from a record.
No personal identifiers will be used in HANA reports. 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 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.
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. HANA published its first Clinical Outcomes Publication in February 2017 and and will continue to publish reports annually. 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
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.
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.
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 up to 15 years to enable us to collect, assess and report on the complications and outcomes of treatments.
National clinical audit is most effective when it has information from as many patients as possible. If you do not want your information to be collected for the HANA audit, 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 information that can be removed from the audit database is destroyed. This will not affect your treatment in any way.
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