Information Governance Conference Call 11th October 2011 (10am – 12pm) Introduction: This conference call was arranged to discuss the specific local Information Governance (IG) issues being experienced by the CAF demonstrator sites. IG was one of the top 3 issues that sites asked to be included at the recent CAF network event. It was felt that the subject could not be dealt with appropriately at the event and it was therefore decided to hold a conference call with a panel of IG ‘experts’ who kindly offered to answer questions raised by sites and offer guidance and potential solutions to issues. Panel Members: Jan Boucher (Information Governance Officer Portsmouth City Council/CAFA 2 IG Lead - Consortium) Chris Hardie (NIGB Social Care Lead) Beverley Carter (Head of IG NHS Portsmouth / Registration Authority Manager) Linda Chan (Organisational Development Manager-Health & ASC, Southampton City Council) Paul McMahon (Records Manager & IG Lead, University Hospital Southampton) Richard Allen (Carer / CAF Team / Wiltshire PCT) List of Attendees: (Appendix A - attached) Q.1 Adam Maddison, Corelogic My main interest, as per my question at the CAF Network day, is regarding local authorities’ corporate IT departments blocking Citizen access to their data: how can we persuade obstinate corporate IT departments to get over their issues and let Citizens access what is rightfully theirs? Background: We are working with Camden who have portal functionality, however, Camden corporate IT department are concerned about opening the system up and making it available to citizens. Are other authorities facing a similar problem? National guidance would be helpful to state that if suppliers go through specified stages then systems should be available for citizens to access. 1 Discussion: What are the issues that the IT department have? It is the responsibility of the information asset register owner to make the decision. The IT department should only ‘hold’ the information. IT systems have been in place longer than IG has had a higher profile – IT did not have to consider IG when systems were put in place. It is difficult to get discussions between IT and IG in council – does Camden have a corporate IG group? Has an impact assessment been done to open up the discussions? Response from Panel: The panel agreed that it was difficult for organisations to separate their IT function from their business function and that more discussion was needed between IT departments and IG. There is a balance between the need to share information to provide a good service and customer experience versus the need for IT to ‘manage the system’. Portsmouth City Council has a corporate IG group which meets monthly and brings together the Head of IT; the Caldicott Guardian etc which has proved very successful. It was also felt that the business case needs to be transparent so that IG is at the forefront of a project to open up the dialogue at the beginning. The panel members suggested that this question should be raised by the IG Lead in Camden with the NIGB for further guidance. It was noted that in respect of a national statement, the long awaited Information Strategy which is due to be published in Winter 2011, is more likely to make specific statements around user access to information. Q.2 Robin Ingram, OLM There is a requirement, both legally – DPA, and for CfH in the IGT that organisations ensure that the subject is aware of what their information will be used for, and how it may be shared. An extract from the Social Care view of the IGT guidance 9-202 includes the following: Using the Information for Purposes Unconnected to Care Services Where an organisation wishes to disclose confidential personal information for a purpose unrelated to care, consent cannot be implied. In most cases, individuals should be asked for their explicit consent for information to be shared with non-care organisations, for example: • housing departments; • education services; • voluntary services; • Sure Start teams; • the police; • government departments. 2 Councils handle this in different ways, with some stating that the information given will be used only for Social Care and will only be shared with other departments or organisation after the express permission of the subject has been obtained, other councils have a blanket statement to the effect that once we have your information we will share it with other departments inside the Council and other organisations such as Police and Voluntary sector if we deem it appropriate. This variation in approaches raises questions on information sharing. If a Council with strict control gets a service user’s permission to share their information with another council, what checks and controls do they put in place to ensure that the service user’s expectations are met? Background: I work with a lot of different councils. The point is about being clear that organisations or people you share information with observe the same processes/practices that you do, otherwise you have guaranteed one thing to the individual but how do you know the people you pass the information onto will do the same? Some councils are very prescriptive about who information will be shared with, whilst others seem to be saying that they will share it as they see fit. Discussion: Is this cross council sharing or cross organisation? It is unlikely that 2 councils would be working with a person at the same time – transfer of cases is on a need to know basis only. Situation of out of county placements will mean that 2 councils are involved with a person. Principle of Data Protection Act says: ‘data shall only be obtained for one or more lawful purposes and shall not be further processed in any manner incompatible with that purpose or those purposes’. You need to tell people what you are using their information for and get consent for it. Suggest when sharing information with another agency that you agree at the outset what the information shared can be used for and commit the other agency to this via a written sharing agreement /protocol. The onus is then placed on them to only use or further share information within the agreed framework. Commissioning organisations which put services in place rely heavily on contracts to contain correct wording so people understand their obligations under IG. Audits can be undertaken to make sure those obligations are met. There is a potential risk of causing harm to an individual if information is shared in a way that has not been agreed with them – they will lose trust in the organisation/person. Response from Panel: A panel member explained that in Southampton City Council an audit had been carried out on how people share information. Southampton, Hampshire and Portsmouth councils and a number of local NHS organisations are working together and have agreed an overarching Information Sharing Protocol to allow them to share information between the organisations. 3 Southampton City Council work in partnership with Capita, in this arrangement they fulfil certain functions as part of their contract, so if they breach IG they breach their contract. It was noted that consent is collected in various ways. In the CAFA2 project the partners are working with the Southampton Overview Group (SOG), which consists of service users and carers, to develop a ‘permission to share and view’ document. This has been ratified by both the Hampshire and Portsmouth Overview Groups (HOG/POG) and will form part of the CAFA2 products at the end of the programme. This document could also be used for voluntary organisations/third parties. The panel expressed concern about local authorities who might have a ‘blanket’ consent form and felt that the Information Commissioner would also have concerns around this. They said it was important to understand why such a system was in place and that it needed further investigation. The panel requested more information about the ’blanket’ consent to share form and how it was explained to individuals, noting that the Social Care Record Guarantee literature should be used to give individuals a full explanation. The panel suggested that Robin should send further information and the ‘link’ for the council website to the NIGB for further investigation. Q.3 Sue Cooper, NHS London London has particular challenges around sharing information across wide areas and between many possible permutations of health and social care organisations. In summary, some areas in London have addressed information governance with Subject Specific Information Sharing Agreements (SSISA) for secure email for specific workflows. BUT, this approach has many down sides – not least that for instance with the Admissions & Discharges workflow (Section 2 & 5’s) – hospitals may need to talk to Boroughs from all over the country – getting them to sign up to a local SSISA is unworkable but without their signature on that SSISA, technically they’d still need to fax information through. We’re looking at a pan-London SSISA and are working on exactly how “sign up” will work. Have any other areas taken this approach and are there any examples of SSISAs that can be shared? Background: I work for the SHA covering all of London. We are looking at secure email, particularly Section 2 and 5 workflows. e.g. if a person requires hospital admission and they have social care needs then information needs to be sent to the appropriate council. This means that a hospital might need to communicate with many boroughs which can be difficult. We are therefore looking at a pan-London information sharing agreement (SSISA) which can held on a website where all parties can sign up to it and view it. 4 Discussion: The CAFA2 project is developing a pan Hampshire agreement based on the ‘Trusted Organisation’ approach – offered to share this with NHS London when signed off. Southampton City UHT has one overall agreement with local arrangements included i.e. a separate protocol between each organisation but said this would be difficult in London when dealing with lots of local authorities and hospitals. Carl Evans said from a national position it felt like there was a lot of duplication around this work and that within the CAF programme we could pull the learning together as everyone is facing the same issues. The NIGB are keen to get good examples of consent forms; IG protocols etc on their website. They are also looking at the IG toolkit to see if it can be more social care focussed. They would like to put some of these issues as FAQ’s on their website. Response from Panel: The panel agreed that there was duplication around this work and felt that it would be helpful to have some examples of good practice and a ‘hub’ somewhere to hold all the information together. Carl suggested that at this time of budgetary constraints there may be some ‘wins’ around bringing all the learning together to provide some guidance. It was agreed to discuss this matter further with the ADASS IMG group. Q.4 Yarni Finney, Rochdale/CAF Co-ordinator Retention of citizen portal record – is this the same as a social care record or as it belongs to the individual, should they be able to keep it open for life e.g. the interaction to the council just gets turned off if they are no longer eligible for or receiving services? Background: I am interested to find out what the retention rules are between a local authority and an individual using a portal to access their records. Discussion: The record shouldn’t be held any longer than it is needed – it should be governed by the existing records policy. What if an individual uses a council portal to amend their own record? If a professional is making a decision on it then it needs to be retained as long as the main record. If a clinician is adding to the record then it needs to be retained as long as the main record. A whole piece of IG needs to be put in place around who can make any changes to a portal record. 5 If a person has a citizen portal record, are the rules different to those who have a social care record? The definition of this type of record needs further clarification – it is new territory. If a portal is going to be left ‘open’ for as long as an individual needs it, it will be ‘active’ and therefore retention is not an issue. Response from Panel: The panel felt that it was important to understand what a ‘portal’ means as each scenario would be dealt with in a different way. The members thought that some good practice examples would be good and Carl suggested that it might rely on views from the Dilnot Commission as things begin to take shape. It was suggested that in light of the issues discussed it would be good to have a workshop specifically looking at citizen portals. Carl confirmed that the CAF Team were looking into this and that it would be good to utilise the expertise of Jan Boucher and the panel members around this work. Q.5 Yarni Finney, Rochdale/CAF Co-ordinator PDS issue: Service user tells GP one address but gives social care real address, difference being so they can keep their GP even when move house. If the address is updated by social care through PDS, what kind of issues would this cause and would social care be supported in putting correct details when they didn’t ask the individual if they could update them on the PDS? Response from Panel: The panel said that this was a very difficult area e.g. if an individual was under the Witness Protection Scheme then there would be a different address on the PDS system. Thought needs to be given to the trust between the local authority and the individual, this would be broken if the authority simply changed the details held on the PDS system, they would need to speak to the individual personally to establish the facts. It was agreed that this may not be an issue when restrictions around registering with a GP are relaxed within the next year. Q.6 Cheryl Martin, Isle of Wight We would like advice on the IG aspects of establishing and using Citizens Portals in the prison including consent to share and how this is collected. Background: This might be about prisoner’s human rights and not really an IG issue. Prisoners are not able to access the internet within the prison for obvious security reasons, so any consent would have to be collected by paper and scanned into their medical records. It is a difficult process for prisoners to be able to view their own record. 6 Discussion: Difficulty of the prison having to retain all the information that is sent to it whilst trying to allow prisoners access. A portal will be very difficult to put into a prison – would need to work alongside the prison authorities/Ministry of Justice to get ‘buy in’. Some barriers have been broken, can now view or record information on a prisoner’s record. A citizen portal should not be the only way of accessing records. Online access is an option but people can request to see their own written records. A prisoner’s record can contain significant 3rd party information which cannot be shared for safety or security reasons so there are lots of issues/obstacles. Response from Panel: The panel agreed this was a difficult issue and offered the opportunity for Cheryl to attend the Portsmouth IG Working Group meeting to discuss this matter further. Jan Boucher will forward dates for the meetings to Cheryl. Carl added that further advice should be sought on this issue from the Ministry of Justice if it was felt that there are some benefits for being able to share information via a portal. He offered to take this up at a national level. Q. 7 Pete Thompson, OLM With regard to Child Protection messaging or notification when a case is under review, such as minutes of meetings etc. Currently this type of notification is handled by admin clerks printing, photocopying and physically mailing paper between agencies. There are clearly potential benefits for efficiency and IG in doing this electronically. What particular IG requirements will need to be considered when progressing with this? Background: We have had scoping meetings with Shropshire Council looking at Child Protection; they are considering using the OLM system to share Child Protection notifications/messaging. We would like to understand what IG requirements we need to consider. Discussion: A secure route is needed – for Health an nhs.net account; for local authority a gsx account. Generally Child Protection information is held in a separate part of the system, so it is not an open record. At a case conference there will be others present e.g. family, education so minutes would still need to be sent by paper as not all would have access – would need a good business case for doing this. It’s good to be thinking about IG at the beginning of the process 7 Response from Panel: The panel felt that it would be good to have some national guidance on this and suggested that the Information Commissioner’s Office should be able to help with this issue. There were 3 people unable to dial into the conference and so 6 questions were not covered on the call. The panel have kindly given their responses to those questions below. Q.8 Stephen Godfrey, Hampshire A service user of mine has dementia and permanently lacks mental capacity to make decisions. I would like to share a summary of the social care information about this person on the local shared health system so that, if/when my service user requires care and treatment, appropriate health staff in A&E/ambulance service/Out Of Hours will be able to access this information (having assessed the best interests of the individual in lieu of explicit consent to view the information) as it will almost certainly be in the best interests of the care and treatment of my service user for them to see this information quickly. Is it acceptable to share information in this way? If it is not, under what circumstances would it be acceptable for me to make a best interests decision to share? Response from Panel: In addition to the Mental Capacity Act 2005 any sharing of personal sensitive data must also satisfy the requirements of the Data Protection Act 1998, Common law duty of confidentiality and right to privacy under Article 8 of the Human Rights Act 1998. People lacking capacity are still owed a duty of confidence and therefore care professionals will often need to make difficult decisions about whether to disclose information and who are the appropriate people to disclose that information to. Where a service user lacks capacity on a permanent basis a decision will need to be taken to determine if it is in the individual’s best interest to transfer information on a routine basis to the local shared health system. The key principles of the MCA are as follows: People are generally assumed to have capacity from the age of 16 and therefore it is for care professionals to demonstrate that an individual lacks capacity to make the particular decision in question. Where capacity is in doubt, then the individual’s capacity must be assessed in relation to the particular decision to be made. There is a duty to support individuals to make decisions for themselves where possible. Where an individual lacks capacity not only should they be consulted about 8 their wishes but there is also a duty to consult with their representatives (this includes legal representatives, the individual’s nominated next of kin). Where an individual’s capacity is temporarily impaired or fluctuates then, where feasible, major decisions should be deferred until the individual can make the decision for him / herself. Having followed the above principles, or in emergency situations, care professionals can make care decisions on best interests grounds about the care of the individual. If there is a legal representative for example named Lasting Power of Attorney or Court Appointed Deputy, depending on their powers they may have the authority to give consent on behalf of the service user and the views of family should also be taken into consideration. The Mental Capacity Act Code of Practice should be consulted as there is a hierarchy of people to be consulted Section 5.49 When reaching the decision all those involved for example social care professionals, legal representatives and family should be fully aware of: The justification for sharing the information The type of data that may be transferred for example care plans, assessments, reviews etc (free text should be avoided as it is open to misinterpretation out of context and may be excessively disclosive) How the information will be used including the purposes Which systems the information will transferring from and to How it will be transferred and stored and the security measures in place Who will have access to the information (organisations and staff roles rather than named individual staff members) How access will be monitored How to opt out if it is no longer in the service user’s best interest; for example if a service user is at risk and their identity needs to be protected Consideration also needs to be given to whether to share information which has been written for a particular context, as when transferred to other organisations there is a risk the information could be misinterpreted. (see http://www.rcgp.org.uk/pdf/Health_Informatics_SRPG_final_report.pdf paragraph 5.7 & 5.8.) It is important to consider therefore whether it would be more appropriate for a summary to be shared, which has been created in the full knowledge that it will shared across health and social care. Summaries written for sharing in a single sector may not be appropriate to share more widely without being reviewed and edited and staff contributing to the record should be aware that it may be shared. 9 In general information should only be transferred when the representatives have agreed the extent of the disclosure and the decision documented. Organisations may wish to ask representatives to provide written confirmation of the documented decision as evidence should the decision be challenged. The decisions of legal representatives, provided it is within the scope of their authority, must be respected. The views of next of kin should generally be respected but there may not be agreement between them, in some instances, the individual will have expressed a wish for information not to be disclosed to their legal representatives and/or next of kin. Robust procedures must be in place to ensure the decision to share is reviewed: Q.9 on a regular basis (at least once a year) If the nature or extent of the data is changed If access is extended to new roles If the purpose of the sharing changes When the service user’s needs change. Jan Hoogewerf, Cheshire East NHS and social care staff are working in joint teams, continuing to be employed by one organisation, but accessing a shared assessment system and managers have access to servers with corporate files of both organisations. The scenario is: an employee working for organisation a) needs access to a system owned by organisation b). Both organisations have the same levels of IG in place (i.e. both using NHS IG toolkit), but IG are raising an issue: ‘If the employee of organisation a) abused their access to the system owned by organisation b), then organisation b) would be liable, but would have no come back against the individual as they did not employ them.’ Is this correct (doesn’t sound like it is to me!)? Response from Panel: A number of Health & Social Care Teams have a legal framework through contracts or a Section 75 Agreement for example Community Mental Health Teams and Learning Disabilities Teams. Groups of staff who work as ‘joint’ teams, e.g. hospital discharge teams and other multi-disciplinary teams have not been formed using the same legal framework. Sharing of personal sensitive data must satisfy the requirements of the Data Protection Act 1998, Common law duty of confidentiality, right to privacy under Article 8 of the Human Rights Act 1998 and Mental Capacity Act 2005. Before any sharing can take place the legal implications must be considered and this should include: 10 What the sharing is meant to achieve What information needs to be shared Who requires access When is should be shared How it should be shared What measures can be put in place to assess if its meeting its objectives What risk does the data sharing pose Could the objectives be met through other means or using anonymised data In order for the processing of personal sensitive data to take place an organisation must have the explicit consent of the individual and this should be informed and freely given. The Information Commissioners Office Data Sharing Code of Practice states: “There must therefore be some form of active communication where the individual knowingly indicates consent.” If organisations are going to rely on consent as the condition for sharing, the individual must know what data sharing they are consenting to and understand the implications for them. They must also have control over whether or not the data sharing takes place. Many electronic health & social care systems cannot be partitioned in a way that will meet the requirements of the act and allow access to limited data sets to meet the objectives set out. Example: Social work staff based in a hospital require access to demographic information and details of professionals who have been providing services so they can notify the appropriate agencies. Access should be limited to what they need to achieve their objective but many systems can only give much broader access (in some cases including day to day care management notes across all disciplines). The issues are: (but not exhaustive) Many service users will not have given their informed, explicit consent to staff from other organisations to having access to their information Information accessible may exceed what is required to achieve the objectives No legal framework for the processing of the data and therefore if there is a breach the Data Controller has no means of redress. Where there is no Section 75 agreement or statutory requirement to share information and the requirements have been met, a robust framework should be put in place to protect the rights of the individual and data controller. 11 A suggested framework might be: Completion of the Information Governance Toolkit to level 2 To carry out a privacy impact assessment Signed Information protocol clearly outlining the justification and purpose of sharing A Legally binding Human Resources Deed outlining staff roles and responsibilities and how breaches will be dealt with or appropriate contract with relevant data protection and confidentiality clauses An operational agreement clearly detailing the objectives, who, what, where, when, how etc For staff to attend local training Staff signing a declaration giving their commitment to adhere to all relevant policies and procedures for both organisations Access monitoring and staff supervision by both organisations There is a need to sort out Data controller / data processor relationship and lines of accountability. Not sure they should both have access. Directors liable under S61 of DPA and individuals may also be liable if there is a breach of confidence of Hounslow and Ealing monetary penalty fine. Q.10 Jan Hoogewerf, Cheshire East If there is a shared system, with data provided by NHS and social care and an individual makes a request for access to their records, which include both NHS and social care assessments, does the request need to be reviewed by both agencies prior to releasing records? (e.g. redacting third party information). NB Some assessments and support plans may have input from NHS and social care in a single assessment document. Response from Panel: If there is an Information Sharing Agreement in place between the Health and Social Care organisations, it may be that this shows an agreement as to whether or not one or both of the organisations need to give permission to release information under a subject access request. If an agreement is not in place, it would suggest that both organisations would need to give permission to share the information before it should be released. Some organisations agree that whoever receives the request is responsible for coordinating it for both organisations, however, each organisation would be responsible for their own file redactions, so the requester would, therefore, only deal with one organisation. 12 Q.11 Jan Hoogewerf, Cheshire East The PCT are commissioning nurses employed in independent sector nursing homes to carry out reviews of residents rather than PCT employed nurse assessors. The nurses will require access to the shared assessment system to record assessments. The system is web-based and they will not have an N3 connection. The plan is to require them to comply with the IG Toolkit (voluntary sector chapter). Does this sound sufficient? Response from Panel: It must be remembered that the IG Toolkit is a self-assessment tool and unless the PCT is carrying out a regular audit of the 3rd party it is difficult to really know if all aspects of confidentiality levels required are being reached. It would be beneficial to consider the following in order to strengthen assurance: Ensure IG Training for these assessors is in place. It has been clearly identified who owns the data. So, who is the controller and who is the processor? Who would be responsible for dealing with a subject access request? Is the web based system secure and where is the data being stored? Who else, other than the nurse assessors have access to this confidential information? Web portal needs to be secure so 3 factor authentication of user i.e. same level as banks. Need to provide information to patients to explain. What information will they access or is it a case of undertaking the assessment and submitting the record but not continuing to care or assess in future? Also need secure storage on local system assuming it will be kept in the nursing home too. Q.12 Jan Hoogewerf, Cheshire East On the citizen portal, we are intending to provide individuals with access to their records on request. To authenticate they will need to set up a user name and password, where the password needs to be strong (e.g. mix cases/numbers/characters). Is this likely to be sufficient? (The paper to NIGB from CAF Programme talked about on-screen characters too to avoid hacking). Response from Panel: It is thought that the requirement for health records (not demographic data only) was meant to be three factor authentication. We think the Cabinet Office stated that ContactPoint should be two factor i.e. user name and password would suffice. There is a need to be sure that the person is who they say they are, so for Healthspace there was a robust registration process (proof of ID and where lives) and then intended to be user name, password and something else, such as a card 13 with numbers on and the person was asked for the letter or number in Row C column 2 type approach; i.e. it was similar to logging into your bank. For access to the basic portal (unclear at this stage what is intended with the CAF portal), it may be that two factor authentication would be enough, but if it includes sensitive personal data then a third factor authentication requirement should be added. Should the CAF portal work include sensitive personal data and two factor authentication is being considered it is recommended NIGB be approached for advice/comments from the Board. Q.13 Saq Yasin, Southampton What is the position where a client gives permission to share, we share information with a third party and then the permission to share is subsequently rescinded? Do we have to ask the third party to delete the information? Or is it case of what's done is done. . . .” Response from Panel: Consent should not be retrospective as what has been shared has to remain that way, decisions may have been taken on the information provided and available at the time, this needs to be kept as an audit trail of how decisions are reached and agreed upon. However there might be grounds to ask for information held to be deleted in some circumstances on a case by case basis. Carl closed the conference by thanking the panel and the attendees for joining the call, the discussions had been both in-depth and helpful. Jan Boucher offered the opportunity for people to email any issues to her or to attend any of the IG Working Group meetings to discuss things further. The NIGB are unable to offer a formal response immediately to the questions but it is their intention to add these questions to their website as Frequently Asked Questions, as all IG leads can then view them. Chris Hardie will advise when this happens. 14 Attendees (Appendix A) Panel Members (Bold) Adam Maddison Corelogic Alison Reeve CAF Team Beverly Carter NHS Portsmouth Carl Evans Chair Cheryl Martin IoW Chris Hardie NIGB Helen Bailey Stockport James Leeming Graphnet Jan Boucher Portsmouth CC Justin Sanders Liquidlogic Justin Thorne IoW Keith Tadd Warwickshire Kevin Cross Rochdale Linda Chan Southampton City Council Mary Riches CAF Team Pat Huston Stockport Paul McMahon Southampton City University Hospitals Trust Pete Thompson OLM Richard Allen CAF Team/Wiltshire PCT Robin Ingram OLM Robin Murray-Neill CAF Team Roger Liptrot Rochdale Stephen Godfrey Hampshire Sue Cooper LPFIT 15