What is the NICR’s method of operation?
The Cancer Registry collects its information electronically using the hospital Patient Administration System (PAS), the Pathology Laboratory System, the hospital multidisciplinary team meeting system (CaPPS) and to a lesser extent, the Death Certificates and Radiology Systems. Approximately 156,000 notifications (based on 2013 data) are recorded annually for 12,500 patients (including 2,500 non-melanoma skin cancers). The data are checked electronically, for errors such as wrong site/morphology combinations and wrong sex/site combinations, using programmes from the International Association for Research on Cancer (IARC) and the Surveillance, Epidemiology and End Results (SEER) programme in the USA.
Notifications are then matched to identify duplicates or new cases. In the majority of cases, each notification received from PAS will have a pathology or cytology report confirming the diagnosis. However, some cancer patients e.g. some lung cancer patients, may not have a microscopically verified tumour as material for a biopsy may be difficult to obtain. Trained Registry staff examine the hospital notes for these 'PAS only' cases so that exact date and method of diagnosis can be assigned to the patient. Additional information is also sought from GP records or cases notified to the Registry solely from death registrations. Once this checking process is complete the records are anonymised for analysis.
For every new cancer, we register the name, address, gender and date of birth of the patient, the type and location of the cancer, how advanced the cancer is and the investigations and treatment received by the patient as well as the other illnesses that the patients may had since these can influence treatment decisions and survival. Most of this information is obtained via pathology records and hospital discharge data. In cases where death occurs, we obtain the date and cause of death from the death certificate.
The Registry has held cancer information on our population of 1.85 million since 1993 and has produced numerous reports.
What is the information from cancer registries used for?
Population based cancer registries are an important tool for the monitoring of time trends and geographical variations in cancer incidence. Cancer registries undertake a range of public health surveillance and health protection functions. The main functions of cancer registries are:
- Monitoring trends in cancer incidence, prevalence and survival over time and
between different areas and social groups. These are presented annually as .
- Evaluating the effectiveness of cancer prevention and screening programmes
For example, population based data are required to monitor the effectiveness
of the existing national screening programmes for breast, bowel and cervical cancer
and to inform the design of new programmes.
- Evaluating the quality and outcomes of cancer care by providing comparative
data about treatment patterns and outcomes
- Evaluating the impact of environmental and social factors on cancer risk. For
example, cancer registry data are used to investigate possible cancer risks in
relation to power lines, landfill sites and mobile phones.
- Investigating differences in cancer incidence, survival and access to
treatment between social classes and thus contributing to programmes aimed
at reducing health inequalities
- Supporting investigations into the causes of cancer
- Providing information in support of cancer genetic counselling services for
individuals and families at higher risk of developing cancer.
- Evaluating programmes of care, quality assurance and relating costs to clinical outcome
- Participation in international research into the causes and epidemiology of cancer including comparisons of survival.
- The management of the substantial resources required for the preventative, curative and laboratory services for cancer;
- The planning and evaluation of clinical management and treatment based on accurate and unbiased survival data and clinical trials;
- Research into causes of cancer, involving case control studies and the flagging of cohorts and information for health education and health promotion for both professionals and the public.
- Monitoring trends in cancer incidence, prevalence and survival over time and
Who handles the cancer data?
Only a few people within the Registry actually work with confidential patient data and most work with anonymized data. Nevertheless, all Registry staff are trained to handle sensitive patient data and to understand the importance of patient confidentiality.
Do you share data?
There are very strict controls about the sharing of any of the data we hold. No patient-identifiable information is shared unless we have patient consent to share it or specific permissions given from a valid research ethics committee. We only release sensitive data if all these conditions are met and the data recipient has appropriate methods for data storage and only hold the data for the period of their study.
Why keep names and addresses?
There are a number of reasons why the Registry needs to keep a record of patients' names and addresses:
To avoid double counting of patients that have cancer, they may be identified from a number of different sources and hospitals. We need to know that a cancer reported from a number of different sources is, in fact, the same cancer; otherwise our registrations would be duplicated and figures & cancer incidence rates would be misleadingly high.
To accurately address concerns about cancer clusters. People are often concerned that there might be a high risk of cancer in their locality. We need to know the exact address of every cancer patient if we are to investigate these risks.
An important indicator of the effectiveness of cancer services is the percentage of patients who survive their cancer. It would not be possible to link a patient’s date of death to their cancer records without identifying information.
People are often worried that their family history may put them at high risk of cancer. An accurate family history is crucial if these individuals are to be offered appropriate advice. The cancer registry is often asked by clinical geneticists to confirm the details of a cancer diagnosis in a relative of someone attending their clinic. In the case of living relatives, this information is only released with the written informed consent of the relative concerned. Often, especially when medical records have been destroyed, the cancer registry is the only available source of such information.
Occasionally, a previously unforeseen, significant late effect of therapy comes to light many years or even decades after that treatment was in widespread use. In these circumstances, it will be necessary, using all available information sources including the cancer registry, to try and trace all patients who might be at risk, so that they can be informed and counselled about possible interventions to reduce their risk.
Names are only used for these purposes and are never passed onto other bodies without patients' written consent. If you are concerned about the fact that your name and address are being held by the Registry you can call or e-mail us to discuss this and, if you wish, your name, address or indeed all information about you can be removed permanently from the Registry. Your doctor is familiar with the work of the Registry and would also be happy to discuss this with you. The Registry is independent of all other agencies, and will not, in any circumstances, share confidential information with any other body.
Where do you get information on the population and death registrations?
Population data is supplied by the demography and methodology branch from the Northern Ireland Statistics & Research Agency (NISRA). The population data given gives populations for each age-group by sex for a range of different geographic areas in Northern Ireland. Information on populations by general practice is also supplied by the Business Services Organisation in the Department of Health, Social Services and Public Safety N.I. (DHSSPSNI). This population information is used to calculate age – sex specific incidence rates and age and sex standardised incidence rates.
The N. Ireland Cancer Registry also receives information on death records from the General Register’s Office, and the DHSSPS. This information is used to calculate cancer survival and various measures of cancer mortality in Northern Ireland.
Is the information confidential?
We treat the information we receive very carefully and securely. We have strict rules about who can see it and who can use it. Information is stored on encrypted computers with strong, secure, passwords. These computers are never left in a situation or place where they could be inappropriately accessed and they are not linked to the internet. Furthermore, the registry is contained within a physically secure environment, employing CCTV, a centralised security alarm system and password-protected door locks. More information regarding the ICT Security Policy can be viewed via this link. Information which would identify an individual is not given out without that individual's written consent. The only exception to this is that a patient's doctor can request information for the purpose of following up the patient. When we publish reports or provide data, the data is anonymised, an individual can never be identified from these. Our policy on confidentiality and security of data explains our rules in more detail.
Can I opt out of cancer registration?
Yes, you do have the right to opt-out. This will not affect the care you receive. However, in order to work effectively, the Registry needs to know about everyone with cancer. Your details can help us:
- Understand the causes of cancer
- Determine the treatments which give the best results
- Evaluate cancer patients care
- Plan and improve cancer services
- Monitor cancer trends in the Northern Ireland
If you are concerned about your details being registered please contact the N. Ireland Cancer Registry directly: Tel 28 9097 6028.
Are you likely to contact me?
The Registry works with its team of researchers, and others, to improve understanding of cancer. Usually the information used in such research is non identifiable. Occasionally a researcher from the Registry may need to contact patients to invite them to take part in a study, with ethical approval. This is done only under strict conditions and nobody is contacted without the knowledge of their consultant at the hospital or their GP. Should you be contacted about a particular research study, information will be provided outlining what may be required from you. There is no obligation to participate in a study and the decision will be entirely yours.
Can you investigate if cancer is more common where I live?
Increasingly, people are becoming worried about the possible existence of cancer clusters. The Registry takes such claims very seriously, but must be extremely careful examining the results. Because it is so difficult to tell a true cancer cluster from a random number of cases which appears to be a cluster, procedures for investigating cancer clusters are followed. Often, studying much larger groups of people will shed more light on the causes of cancer than studying isolated clusters based on a small area. More information can be found here.