Radiotherapy is an essential treatment approach in head and neck cancer. Many patients are offered radiotherapy or chemoradiotherapy following successful surgical tumour resection, but there are many complications associated with this treatment, and there is little evidence to determine if adding radiotherapy in this situation will give any survival benefit. This study will compare the genetic profile of patients with and without severe swallowing difficulties following radiotherapy and try to identify genetic factors associated with a higher risk of developing severe complications.
Saving Faces are working closely with Dendrite Clinical Systems Ltd. to deliver the National Head and Neck Cancer Audit (HANA). HANA aims to assess the process of care and its outcomes in patients diagnosed with new primary or recurrent head and neck cancer in England and Wales and to improve the quality of services and the outcomes achieved for patients.
Clinical audits can provide an excellent way of improving the patient experience. Audits enable hospitals to monitor the standard of care received by their patients 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 have developed and will 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 is the short name given to the England and Wales Head and Neck Audit and Registry. The previous National Head and Neck Cancer Audit, DAHNO (Data Audit for Head and Neck Oncology) 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 in partnership with the audit technology company Dendrite Clinical Systems Ltd. The commissioning arrangements for HANA changed again in May 2017. HANA continues as a national audit, but is funded by Saving Faces who manage the audit with input from head and neck cancer and audit experts who sit on its steering committee.
HANA will collect information from all hospitals within England and Wales that diagnose and treat patients with cancers affecting all subsites in the head and neck such as the voice box (larynx), sinuses, jaws and mouth (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 your HANA data to other NHS databases held by NHS Digital 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 a patient’s personal identifiers are no longer needed for recording and analysing their presentation, investigation, treatment and the clinical, emotional and sociological outcome of that treatment their identifiers will be permanently removed from their record.
No personal identifiers will be used in HANA reports. Once a year Dendrite will combine the information from every individual hospital seeing and treating head and neck cancer patients in England and Wales. They will process and analyse 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 from the reports produced. Dendrite will work with Saving Faces to produce regular 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 The British Association of Head and Neck Oncologists (BAHNO).
Stakeholders – hospital and general practice 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 will continue to publish reports. 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 further improvements in patient care. These will be circulated to all stakeholder groups and presented at meetings of stakeholders.
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 and their hospital / Trust’s relevant administrative staff 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, the Health and Social Care Act 2001 and the EU General Data Protection Regulation 2018. 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 20 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 and they should inform their hospital’s staff not to transfer your data to Dendrite. 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.
The areas of research are:
- Living with and beyond Head and Neck Cancer: Psychosocial Factors Associated with Impact of Cancer and Quality of Life
There are very few studies on the psychosocial determinants on long-term quality of life and the needs of survivors and their families. This study will examine the psychological well-being and the quality of life of head and neck cancer survivors, as well as the positive and negative outcomes associated with head and neck cancer. The ultimate aim of this work is to improve quality of life in head and neck cancer survivors and their families.
- Optimisation of a quantitative malignancy index diagnostic system for oral cancer detection and tumour margin assessment.
This study aims to develop a sensitive, reliable and fast cancer diagnostic test for mouth cancer by using a new gene quantification method which can detect the presence of cancer cells by measuring the levels of cancer-causing genes in tissue biopsy samples. Mouth cancer affects over 5,500 people every year in the UK and has higher death rates than cancers of the colon, breast, vulva or melanoma. The number of mouth cancer cases has increased significantly (>20%) over the last decade especially in younger adults for both sexes. Despite improvements in chemotherapy and surgical techniques, ~50% of mouth cancer patients still die from the disease partly due to incomplete removal of cancer cells during surgical treatment. A reliable diagnostic test would enable clinicians to give appropriate tailored treatment which will make a real difference to patients.
- Changes in keratin expression in HPV16-immortalised keratinocytes
Human papillomavirus type 16 (HPV16) is increasingly recognised as a cause of head and neck squamous cell carcinoma (HNSCC); a type of cancer characterised by high incidence and high mortality. The aim of the study is to provide the basis for a novel biomarker by investigating the effect of HPV16 upon keratinocytes, the natural host for HPV16 infection. The study mostly focuses on two aspects: keratin expression and transcription factors regulating keratinocyte differentiation.
From the above you will see that we are supporting important areas of research into facial cancer, all of which have an undoubted clinical impact;
- Basic scientific research at the molecular level
- Research into the psychological effects of living with the consequences of these conditions and the development of tailored support programmes.
- The development of diagnostic tests and targeted treatment strategies
Click here to read all our Saving Faces-funded PhD student profiles and their progress reports.
Update 17/10/2019: The results of the SEND study is published in the British Journal of Cancer and has been recommended in the F1000 Prime as being of special significance in its field.