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Information Governance and Cancer Intelligence National Cancer Intelligence Network
Successful cancer intelligence requires access to personal information... <ul><li>Individuals’ health records and the deta...
..but holding such information presents risks that must be managed through appropriate governance and security measures Lo...
The law attempts to balance the benefits and risks of holding personal information <ul><li>Informed consent is generally r...
For cancer registration, Parliament has decided that the benefits of collecting data without consent outweigh the risks to...
By providing a single, controlled repository of data, cancer registries can minimise risks to privacy and maximise benefit...
Cancer registry access policies are designed to prevent the disclosure of identifiable data into the public domain Identif...
Access to identifiable or potentially identifiable data is strictly controlled <ul><li>Data are shared between cancer regi...
The information governance arrangements for cancer registration are kept under constant review <ul><li>Collecting and hold...
Information Governance and Cancer Intelligence National Cancer Intelligence Network
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Information Governance And Cancer Intelligence V1 0

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Information Governance And Cancer Intelligence V1 0

  1. 1. Information Governance and Cancer Intelligence National Cancer Intelligence Network
  2. 2. Successful cancer intelligence requires access to personal information... <ul><li>Individuals’ health records and the details of their treatment are highly personal information </li></ul><ul><li>However, cancer registration and cancer intelligence require identifiable data to: </li></ul><ul><ul><li>avoid duplication of records where patients attend for treatment at different hospitals </li></ul></ul><ul><ul><li>allow linkage with other data sets to analyse survival or patterns of care </li></ul></ul><ul><ul><li>perform geographic analyses (e.g. to investigate ‘clusters’ of cancer cases) </li></ul></ul><ul><ul><li>provide information where people are concerned that their family history may put them at high risk (a growing area as genetic testing becomes more common) </li></ul></ul><ul><ul><li>recontact patients with new information if previously unknown effects of a therapy are discovered (e.g. an increased risk of breast cancer identified in women treated for Hodgkin’s disease using radiotherapy) </li></ul></ul><ul><li>A shared ‘key’ (such as an NHS number), rather than directly identifiable details such as patient names, addresses and dates of births are used; but data quality is not always good enough to allow this </li></ul>
  3. 3. ..but holding such information presents risks that must be managed through appropriate governance and security measures Losses of sensitive data: Breaches of trust / confidentiality: Inappropriate or misleading uses: Sources: BBC News; International Herald Tribune; Press Association; Associated Press; Nature
  4. 4. The law attempts to balance the benefits and risks of holding personal information <ul><li>Informed consent is generally required to store and use identifiable personal data </li></ul><ul><ul><li>Anonymised data can be used without consent </li></ul></ul><ul><li>The law allows the use of information without consent if this is in the public interest and requires its collection and use in some cases (e.g. certain infectious diseases) </li></ul><ul><li>What constitutes a sufficient public benefit to over-ride individuals’ rights to privacy is open to interpretation – much of this has not been tested in court </li></ul>Common law of confidentiality Data Protection Act 1998 Human Rights Act 1998 NHS Act 2006 & Health and Social Care Acts 2001/8 <ul><ul><li>Enforces the confidentiality of medical information </li></ul></ul><ul><ul><li>Requires the ‘fair processing’ of personal information </li></ul></ul><ul><ul><li>Provide powers to use patient details without consent </li></ul></ul><ul><ul><li>Provides individuals with a right to privacy </li></ul></ul>
  5. 5. For cancer registration, Parliament has decided that the benefits of collecting data without consent outweigh the risks to individuals’ privacy <ul><li>The UKACR provides an information leaflet for patients, and they can opt out of the system at any time by contacting their local cancer registry </li></ul><ul><li>Obtaining informed consent for cancer registration is considered unworkable: </li></ul><ul><ul><li>Complete population based information is required to avoid bias and to ensure the credibility of information </li></ul></ul><ul><ul><li>Informed consent would have legal limitations that would reduce its utility and is unlikely to have lifetime validity </li></ul></ul><ul><li>However, the collection of this data without consent has been challenged in the past: </li></ul><ul><ul><li>In 2000, the GMC issued guidance advising doctors that the submission of data to registries without consent was unacceptable (this guidance was withdrawn after the Health and Social Care Act was passed in 2001) </li></ul></ul><ul><li>The collection of cancer registration data without consent is authorised under a Statutory Instrument agreed by Parliament in 2002 </li></ul>
  6. 6. By providing a single, controlled repository of data, cancer registries can minimise risks to privacy and maximise benefits Cancer registration Cancer waits Hospital Episode Statistics Mortality data Radiotherapy / chemotherapy data Linked National Repository Commissioning Clinical Audit Research Analysis Data are collected once... ...processed and linked in a controlled environment... ...and released under strict conditions Cancer Registries Identifiable data (Encrypted) Identifiable data (Encrypted) Anonymised / pseudonymised data Data held in a secure environment
  7. 7. Cancer registry access policies are designed to prevent the disclosure of identifiable data into the public domain Identifiable Data Items: Name Address or postcode Full date of birth Full date or cause of death NHS or hospital numbers Potentially Identifiable Data Items: Individual records (even if they do not include identifiable information) Tables of data with cell counts of less than 5 based on: Tables of data containing cells that have underlying populations of less than 1000 areas where the total population is less than approximately 62,000 any area where data may be combined with PCT level data to provide information on population ‘slivers’ five-year age groups between 0 and 24 years where there is a non-negligible risk of disclosure No registry publications or reports ever identify individuals
  8. 8. Access to identifiable or potentially identifiable data is strictly controlled <ul><li>Data are shared between cancer registries and may be released to NHS organisations and healthcare professionals providing care for those patients, or monitoring the quality of cancer service provision </li></ul><ul><li>They are also released for research uses, but only to bona fide medical researchers who: </li></ul><ul><ul><li>have either the patients’ consent or Section 251 support from the NIGB </li></ul></ul><ul><ul><li>have approval from the relevant Medical Research Ethics Committee and </li></ul></ul><ul><ul><li>can justify the use of identifiable data to the registry director </li></ul></ul><ul><li>These researchers must agree to strict conditions of access: </li></ul><ul><ul><li>The minimum data necessary will be provided </li></ul></ul><ul><ul><li>The data must be kept securely then destroyed when the study is completed </li></ul></ul><ul><ul><li>The data must not be linked with any other datasets without prior permission </li></ul></ul><ul><ul><li>The researchers may not attempt to identify individuals or contact them (unless they have consent from the patients themselves or their clinicians') </li></ul></ul><ul><ul><li>The data must not be released into the public domain and any publications must be submitted to registry for review </li></ul></ul>
  9. 9. The information governance arrangements for cancer registration are kept under constant review <ul><li>Collecting and holding data: </li></ul><ul><li>Working with the National Information Governance Board to ensure adequate safeguards and oversight </li></ul><ul><li>Working with the NHS Information Centre to further develop the national repository </li></ul><ul><li>UKACR is working to reduce the use of identifiable data in information flows </li></ul><ul><li>Accessing data: </li></ul><ul><li>Strict UKACR governance arrangements are already in place </li></ul><ul><li>Working to extend these to the linked national repository </li></ul><ul><li>Working with the NCRI and OnCore UK to produce guidance on access to data resources </li></ul>
  10. 10. Information Governance and Cancer Intelligence National Cancer Intelligence Network

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