Information Governance Policy Reference: Information Governance Policy Date Approved: April 2013 Approving Body: Board of Trustees Implementation Date: April 2013 Version: 6 Supersedes: 5 Stakeholder groups consulted: Target Audience: Review Date: Lead Executive Author/Lead Manager: Information Governance Steering Group, Directors Team, Governance Committee Staff, Volunteers April 2018 (or earlier if changes in the law) Data Protection Officer Karen Pearce Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 1 of 14
Information Governance Policy Contents Page Contents 2 1. Policy Statement of Intent 3 2. The MND Association s Information Governance Policy 4-6 2.1 Introduction 2.2 Purpose of Policy 2.3 The Association s approach to Information Governance 2.4 Policies and procedures used by the Association 2.5 Responsibilities and accountabilities 2.6 Information Governance structure and responsibilities 2.7 Approval 3. Appendix A: Terms of Reference (Information Governance Steering Group) 7 4. Appendix B: Subject Access Request and Procedure 8 5. Appendix C: Subject Access Request Letter 9 6. Appendix D: Freedom of Information request 10 7. Appendix E: Caldicott Principles 11 8. Appendix F: Information Sharing Processes (Health & Social Services) 12 9. Appendix G: Information Sharing Protocol (Health & Social Services) 13 10. Appendix H: Breach of Data Management Procedure 14 Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 2 of 14
1. Policy Statement of Intent As the Association expands its services to include care delivery that is funded through public sector resources, it has an obligation to assure that the public and its membership information is managed appropriately. Information is a vital asset to the Association. It is used on a daily basis for the management of all of our services. As we deliver care, such as Wheelchair Services, on behalf of statutory bodies we have a responsibility to people with MND for the efficient management of services and resources. Information plays a key part in Clinical/Research Governance, financial management, service planning, measuring and evidencing performance. It is of paramount importance to ensure that information is efficiently managed. It must be reliable, available at the point of need and appropriately retained and retrievable for future use. Staff and, where relevant, volunteers must be effectively trained and understand their responsibility for information. This activity is supported by a series of policies and procedures, with management accountability and structures to provide a robust governance framework for information management both now and in the future. Information Governance is a framework that brings together all of the statutory and mandatory requirements, and best practice standards that apply to the handling of information, allowing: Implementation of central advice and guidance Compliance with the law Self-assessment audits and assurance processes to measure and report performance Year-on-year improvement plans Public assurance and confidence in the Association s management of personal data Protection and maintenance of intellectual property Commercial and contractual compliance. The Information Governance Toolkit produced by the Information Commissioner s Office, groups the standards under six initiatives: 1. Information Governance Management Assurance 2. Confidentiality and Data Protection Assurance 3. Information Security Assurance 4. Clinical Information Assurance 5. Secondary Uses Assurance 6. Corporate Information Assurance. This Information Governance Policy sets out the Association s policy for the governance of information within the organisation in accordance to those standards. The policy will be reviewed and revised as and when it becomes necessary and at least every three years. Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 3 of 14
2. The MND Association s Information Governance Policy 2.1 Introduction Information is a vital asset in terms of supporting service users, engagement with stakeholders and the efficient management of services and resources. It plays a key part in clinical governance, service planning and performance management. It is, therefore, of paramount importance that information is safely, securely and effectively managed, and that appropriate policies, procedures, management accountability and structures provide a robust governance framework for information management. 2.2 Purpose of the policy This Information Governance (IG) policy provides an overview of our approach to information governance, a guide to the procedures in use and details about the IG management structures within the organisation. 2.3 The Association s approach to Information Governance The Association strives to effectively implement information governance, and will ensure the following: Information will be protected against unauthorised access Confidentiality of information will be assured Accuracy of information will be maintained Information will be supported by the highest quality data Regulatory and legislative requirements will be met Business continuity plans will be produced, maintained and tested Information Governance training will be given to all staff and volunteers as necessary to their role All breaches of confidentiality and information security, actual or suspected, will be reported and investigated. 2.4 Policies and procedures used by the Association Information Governance will be managed through staff and volunteer compliance with the following policies and procedures: Data Protection Policy and Procedure The Minimum Data Set (MDS) and Enhanced MDS s Business continuity plans and procedures Condition of employment policies including: o Confidentiality Policy o Protection of Vulnerable Adults and Children Policy o Working at Home or Away from the Office Policy o Use of Information Communication Technology Policy o Commercial and Contractual Compliance Policy o Management of Intellectual Property Policy Volunteer agreement Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 4 of 14
Information incidents: guidelines on identifying and reporting information incidents: Breach of data management procedure 2.5 Responsibilities and accountabilities The designated Information Governance / Data Protection lead for the Association is The Data Protection Officer, with delegated authority from the CE. The key responsibilities of the lead are: Developing and implementing IG procedures and processes for the Association Raising awareness, providing advice and guidelines about IG to all staff Ensuring that training needs are identified, developed and available Co-ordinating the activities of any staff given data protection, confidentiality, information quality, records management and freedom of information responsibilities Ensuring that data is kept secure and that all data flows, internal and external are periodically checked against the Caldicott Principles when sharing information with health and social care bodies (appendix E: Caldicott Principles) Monitoring information handling in the organisation to ensure compliance with law, guidance and local procedures Ensuring service users are appropriately informed about the organisation s information handling activities. The day-to-day responsibilities for providing guidance to staff and volunteers will be undertaken by relevant line managers. The Association s Board of Trustees and the Chief Executive are responsible for ensuring that sufficient resources are provided to support the effective implementation of IG in order to ensure compliance with the law and the IG assurance framework. All staff and volunteers, whether permanent, temporary or contracted, and contractors are responsible for ensuring that they are aware of and comply with the requirements of this policy and the procedures and guidelines produced to support it. 2.6 Information Governance structure and responsibilities The Board of Trustees via the Governance Committee is ultimately responsible for Information Governance within the Association and is also responsible for ensuring that sufficient resources are provided to support the requirements of the policy. The Chief Executive is the Accountable Officer with responsibility for ensuring overall Association compliance with its charitable obligations and relevant statutory obligations linked to Department of Health funded services. Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 5 of 14
The Data Protection Officer has responsibility delegated from the Chief Executive for ensuring that effective systems and processes are in place to deliver the Data Protection and Information Governance agenda. The Directors are accountable to the Chief Executive for ensuring the effective implementation of the underpinning policies and procedures for IG within their respective directorate. The Senior Managers / Heads of Service are responsible for ensuring that all directorate staff are made aware of and comply with the policies, procedures and standards which support Information Governance. All Staff and volunteers, whether permanent, temporary or contracted, including students, agency staff and contractors are responsible for ensuring they are aware of the Information Governance requirements and for ensuring they comply with these on a day-to-day basis. For ease, the key policies are the Data Protection Policy, The Confidentiality Policy and The Information Security Policy. Any identified breach of information management will be reported by staff or volunteers immediately to their respective line managers for appropriate action. The Information Governance Steering Group is responsible for steering and overseeing the Association s compliance with the best practice standards set out in the NHS Information Governance Toolkit. This will support the Association in complying with standards required should it acquire Any Qualified Provider status. The Steering Group will ensure the development and maintenance of policies, standards, procedures and guidance, the development of an Information Governance framework and the design and review of performance indicators to measure compliance and progress against the Association s risk register. The Information Governance Steering Group reports to the Governance Committee (appendix A: Terms of Reference). 2.7 Approval This policy has been approved by the undersigned and will be reviewed on a three yearly basis or unless changes in national/european law indicate earlier amendments. Name Date approved Review date Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 6 of 14
3. Appendix A: Terms of Reference (Information Governance Steering Group) Aim: To promote and monitor information security as an aid to the effective delivery of our mission. Membership: The Information Governance Steering Group (IGSG) will be made up of: The Data Protection Officer (Chair) Head of ICT Head of Communications A representative from each directorate Other members may be co-opted as appropriate, such as, the Human Resources Manager and members supporting internal audit procedures. Frequency: The IGSG will meet on a 3-monthly basis (as a minimum). Responsibilities the IGSG will be accountable for: The promotion of information security throughout the Association The review and recommendation for the approval of all information security related policies and procedures The monitoring of programme progress to achieve compliance with statutory / legislative requirements, and develop systems to ensure best practice The review and monitoring of information security incidents, their cause, resolution and future prevention using the Breach of Data Management Procedure Reviewing information security risk assessments and improvement plans Consideration of solutions to improve information security Monitoring and auditing compliance with relevant Association policies Receiving and reviewing information security related reports (e.g. internal audit) Reporting: The IGSG will report to the Governance Committee through the Directors team and from there to the Board of Trustees Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 7 of 14
4. Appendix B: Subject Access Request and Procedure Any person the Association holds personal data on has a right to know about this. This is the right of Subject Access. Requests are often made if the person has some form of grievance with the Association, so it is important to ensure the Subject Access Request (SAR) is undertaken correctly. The right applies to data held both manually and electronically and includes access to medical records. In principle: The individual has the right to see most of the data held about them The Association must respond promptly to any request and within 40 calendar days The Association may charge up to 10 for a request (at Senior Management discretion) In general all information held by the Association at the time of the request must be provided in a permanent format unless: o It is not possible o It involves disproportionate time/effort o The person making the request agrees otherwise. There is information that some organisations are exempt from providing. To ensure best practice, when a SAR is received the following procedure will take place: SAR Received Date of receipt recorded SAR refereed to the Data Protection Officer Information collated Identity of person submitting SAR confirmed Electronic and manual data collected can this be achieved in a reasonable time/is it possible? Sense check Information checked to ensure no third party data included this cannot be shared without explicit consent of the third party Consider time taken to collate, will a charge be levied? Data sent to individual Send information to individual by recorded delivery Record actions in SAR log and time frame Indicate if breach of 40 day timeframe and actions taken to prevent recurrence Inform IGSG Inform Information Governance Steering Group a SAR has been received and responded to within timeframe Report if breach and action taken Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 8 of 14
5. Appendix C: Subject Access Request Letter (Insert own address) (Insert date) (Insert organisation address) To the company secretary (if contact unknown), Re: (insert name and current address) I am writing to make a subject access request under the Data Protection Act 1998 for any personal information you hold about me (or include specific details about the information you require here). (Insert any information you think the organisation will need to find your information and to confirm your identity. For example, your employer may need your payroll number, and a hospital may need your NHS number; other organisations may require a document bearing your signature for example your passport or your driving licence). Please inform me, prior to processing this request, if you require a fee to be paid. I will look forward to receiving this information within 40 days. If you have any queries or questions then please contact me on (insert phone number/email address). Yours faithfully, (Insert own name) Top Tips: Remember to try to send your request by recorded delivery Remember to keep a copy of the letter and any further letters you send or receive A fee of no more than 10 may be payable The information may be sent to you as a computer print out, in a letter or forum Please contact the ICO if you experience difficulty in getting your information Web: www.ico.gov.uk Tel: 0303 123 1113 Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 9 of 14
6. Appendix D: Freedom of Information Request The Freedom of Information Act 2000, which came into force on 1 January 2005, is about open government. It is primarily a means of increasing transparency in official decision making and procedures, and enabling citizens to hold government to account. Ticher, P, in Association with Bates Wells and Braithwaite Solicitors 2009, Data Protection for Voluntary Organisations. Voluntary organisations are not usually required to provide information under the Freedom of Information Act (FOIA) 2000. However, should a voluntary organisation hold information on behalf of a public body (such as a contracted-out service), then it may be required to pass information to that body in order for it to meet a FOI request. In these circumstances the Association would be expected to respond swiftly in order to ensure compliance with the time limit of 20 working days. Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 10 of 14
7. Appendix E: Caldicott Principles The MND Association is not governed by the processes of the Caldicott Report which was reviewed in March 2013, as it is a voluntary organisation. It does look to work within the Caldicott Principles which will support information sharing when working in collaboration with other organisations whether statutory or voluntary. The Caldicott Report (December 1997) and Executive Letter (January 1999) indicated a need for a process of continuous improvement in medical confidentiality within the National Health Service, including organisations now comprising the Health Protection Agency (HPA). In accordance with guidance laid out in the report, the HPA has appointed a Caldicott Guardian who is responsible for overseeing good practice in respect to access to, sharing of and confidentiality for patient records. These requirements especially affect data with Personal Identifiable Information. This is why some statutory bodies require additional reassurance when sharing data with staff and volunteers working with the Association. Personal Identifiable Information is information that could identify a person with MND in this instance, or any individual. It includes things like an NHS number, National Insurance (NI) number, date of birth or postcode, or data which can indirectly link to an individual by combining information (for example, country of birth, age and laboratory name). The Association does collect some of this data and, therefore, it would be best practice to work within the principles of the Caldicott Report which are summarised as follows: 1. Justify the purpose(s) for using patient data 2. Don t use patient-identifiable information unless it is absolutely necessary 3. Use the minimum necessary patient-identifiable information 4. Access to patient-identifiable information should be on a strict need to know basis 5. Everyone should be aware of their responsibilities to maintain confidentiality 6. Understand and comply with the law, in particular the Data Protection Act 7. The duty to share information can be as important as the duty to protect patient confidentiality The Association has processes in place to adhere to these through: Minimum data sets (MDS) or enhanced MDS Data Protection Policy and Procedure Confidentiality Policy and Procedure Relevant training Induction procedures Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 11 of 14
8. Appendix F: Information Sharing Processes (Health & Social Services) i. The Association believes that accurate, timely and relevant information is essential to deliver the highest quality care. Each member of staff and volunteer is individually responsible for ensuring the quality of information they obtain and record, and to actively use information in accordance to the requirements, standards and best practice set out in the Information Governance Policy. ii. iii. iv. The Association supports the principles of Corporate Governance and recognises its public accountability, but equally places importance on confidentiality of both personal information about staff, volunteers, people affected by MND and commercially sensitive information. The Association also recognises the need to share information about people with MND with other health organisations and other agencies who work in partnership to deliver care and will do so in a controlled manner that is consistent with the interests of the person with MND with their consent, and in some circumstances, the public interest. It will also be consistent with the principles of the Caldicott Report. Information about the Association and its services will be made available to the public through the Annual Report. The Association will establish and maintain policies and procedures to ensure compliance with the right to know principles of the Freedom of Information Act (FOIA) 2000 (appendix D). v. The Association will proactively provide information under the FOIA Publication Scheme in accordance with the Information Commissioner s specifications for those services funded through public sector bodies (subcontracted to the Association) should those public sector bodies request the information. It does not need to publish information related to services funded through charitable income. vi. vii. viii. People with MND will have ready access to information relating to their own care, their options for treatment and their rights as patients. This is to enable them to make informed choices through the health service bodies hosting services, provided under the MND Association banner. The Association will support this process if necessary. The Association will publish clear procedures and arrangements for handling requests for information from people with MND and the public (appendix B) People with MND also have the right to access information through a Subject Access Request letter (appendix C). Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 12 of 14
9. Appendix G: Information Sharing Protocol (Health & Social Services) Between: The Motor Neurone Disease Association and Date: The above listed partners agree to: i. At the outset, explain to people affected by MND openly and honestly what, how and why their information will be shared, and seek their consent. The exception to this is when a child, young person or others are at risk of significant harm. The withholding of this information could undermine the prevention, detection or prosecution of a serious crime. ii. iii. iv. Always consider the safety and welfare of those affected by MND when making a decision on whether to share information about them. Where there is concern that a person may be suffering or at risk of significant harm, the person s safety and welfare must be paramount. Where possible, respect the wishes of those affected by MND who do not consent to share their information. We may still share information, if our professional judgment on the facts, suggest there is sufficient public interest to override the lack of consent. Seek advice where we are in doubt, in particular where our doubt relates to a concern about the possibility of significant harm. v. Ensure that the information we share is accurate and up-to-date, necessary for the purpose for which we are sharing it and only on a need to know basis. vi. vii. viii. ix. Name: Always record the reasons for our decision. We understand that information concerning service users or staff is strictly confidential and must not be disclosed to unauthorised persons. This obligation shall continue in perpetuity. Disclosures of confidential information or disclosures of any data of a personal nature can result in prosecution for an offence under the Data Protection Act 1998 or an action for civil damages under the same Act. Both parties have read and understood the MND Association s Information Sharing Policy. Title: Organisation: Signature: Date: Name: Title: Organisation: Signature: Date: Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 13 of 14
10. Appendix H: Breach of Data Management Procedure Breach of data management is identified either through accidental loss, human error, theft, unauthorised use, equipment failure, attack on system. Any member of staff or volunteer identifying a breach or potential breach of data management should report this immediately to their line / role manager. 10.1 Containment and recovery plan including damage limitation Data Protection Officer leads investigatory team Appropriate support resources made available e.g.: IT/Legal Recorder of actions identified Inform CE, who may escalate to Chair of Boards/Communications team 10.2 Assessment of ongoing risk and seriousness of impact on individuals Identify how serious risk is (risk to safety?)/how substantial (numbers involved) Identify whose data has been lost Is there a risk to reputation implement crisis communications plan Identify where data has gone, if possible Identify type of data personal sensitive. What will data tell 3rd party, and how could it be used? Was encryption/password protection in place 10.3 Notification of breach Notify individuals concerned as soon as possible once actions are clear Notification of internal relevant staff and other regulatory bodies Notify other third parties e.g. police/bank Manage communications with other stakeholders including media Data Protection Officer takes advice from ICO Notify ICO loss of laptop with unencrypted info of more than 100 individuals Notify ICO loss of manual info of more than 50 individuals 10.4 Evaluation and response Shared area with Association containing breaches, actions, review process, learning and monitoring held in CE office Training/learning / disciplinary actions identified. Any disciplinary procedures to be undertaken by independent director Any action against a third party to be identified and proceedings commenced and documented Communications response drafted, circulated to appropriate stakeholders and monitored Mndahome-projects-IGSG-Documentation UNCONTROLLED COPY WHEN PRINTED Page 14 of 14