GPES Independent Advisory Group Minutes

Transcription

1 Meeting date: Thursday 13 December 2012 Location: Ambassadors Bloomsbury, 12 Upper Woburn Place, London WC1H 0HX Members in attendance: Name Neil Serougi Angus Dawson Joanne Bailey Eve Sariyiannidou MacDonald Mopho Christine Boyd Mary Hawking Ian Herbert Simon de Lusignan Title Chair Ethicist and Vice Chair British Medical Association (BMA) Nominee Lay Member Lay Member Lay Member British Computer Society (BCS) Primary Health Care Specialist Group GP Nominee British Computer Society (BCS) Primary Health Care Specialist Group Non-clinical Nominee Royal College of General Practitioners (RCGP) Nominee Also in attendance: Name Frances Hancox Malcolm Oswald Amanda Wogan Matt King John McGhie Dominic Hunt Jeremy Thorp Title IAG Secretariat, Health and Social Care Information Centre (HSCIC) IG Assessor, HSCIC Head of GPES Business Unit, HSCIC Customer Service Manager, HSCIC Information Services Manager, HSCIC Senior Information Analyst, HSCIC Programme Delivery Director, NHS Information Reporting Services (NIRS) (agenda item 4 only) Apologies: None Agenda items: 1. Welcome and introductions 2. Declaration of interests 3. Minutes of last meeting, matters arising and actions 4. Information session: care.data 5. Key points from Learning Disabilities Observatory discussions 6. IAG management tasks 7. Any other business APPROVED P a g e

2 Welcome and introductions The GPES Independent Advisory Group (IAG) members were welcomed to the meeting. It was noted that due to personal circumstances the Chair would leave the meeting following agenda item 4, and the Vice Chair would chair the meeting for agenda item 5 onwards. Declaration of interests It was noted that the Register of Interests had been updated as discussed at the previous meeting. Members provided additional updates to the Register of Interests; it was noted that Simon de Lusignan had taken on a part time role as Medical Director of the RCGP Research and Surveillance Centre, that Mary Hawking would be participating in the Bedfordshire Clinical Commissioning Group (CCG) IT and Informatics Steering Group, and that Joanne Bailey would become a locum GP from 31 December. It was agreed that the Register would be updated to include these and re-circulated. Minutes of last meeting, matters arising and actions The minutes of the previous meeting, 8 November 2012, were reviewed and approved as an accurate record. An update was given on the progress of actions: 11/10/12-02: An update was given regarding the forthcoming UK Biobank data extraction. The IAG were informed that the GPES Business Unit were currently working with GP system suppliers regarding this data extraction, and that the delivery of the extracted data was planned to take place around April The IAG queried this timescale, and it was noted that there was a relatively long time from IAG consideration to delivery of data due to the fact that UK Biobank was an early adopter requirement, and that not all the relevant technical infrastructure was currently in place to run the extraction. There was a brief discussion regarding the expected volume of future customer requests, and it was noted that the IAG would be asked to consider multiple customer requests at each meeting once the service was fully functional. 11/10/12-03: It was noted that the next edition of the GPES Practice Newsletter was planned for February, and that this action was ongoing. 11/10/12-04: This would be covered under action 08/11/ /10/12-05: A summary document of key points from the Learning Disabilities Observatory (LDO) discussions had been provided, and it was noted that time was scheduled on the agenda for discussion later on in the meeting. 11/10/12-06: It was agreed that the IAG would discuss at its April meeting whether to invite Mark Davies to attend a second meeting. 08/11/12-01: The Register of Interests had been updated and circulated as agreed. 08/11/12-02: Meeting timings had been confirmed. APPROVED P a g e

3 08/11/12-03: The GPES Business Unit did not believe that it would be appropriate for anyone from within HSCIC to deliver an information session on the Clinical Practice research Datalink (CPRD). It was agreed that this would be revisited at the April 2013 IAG meeting. It was also noted that a statistics information session had not yet been scheduled, but that work to determine an appropriate presenter was ongoing. It was agreed that a statistics information session would need to be focused on issues that would be relevant to the IAG, such as sampling methodologies, rather than covering broader topics. Information session: care.data At this point Jeremy Thorp joined the meeting to deliver a presentation on the NHS Commissioning Board s care.data programme. The presentation covered the establishment of the Patients and Information Directorate within the NHS Commissioning Board, the intended purpose of the care.data programme, what data it was proposed would be used and the safeguards being put in place. The GPES IAG were invited to ask questions and provide feedback on this, ahead of a formal customer request for data extraction being sent to the IAG for consideration at its February 2013 meeting. The IAG were informed that the intention was for care.data to provide the infrastructure to support the collection, validation, storage and presentation of data for use by the public, commissioners and health research organisations. The key purposes listed included supporting measurement against domains in the NHS Outcomes Framework, monitoring patient pathways, enabling commissioners to monitor and manage services and outcomes, providing data for life sciences including NICE analysis and research activities, and providing information to patients and members of the public. To support this, the intention would be to utilise a number of different data sources such as general practice data, primary care prescribing data, pathology results, secondary care clinical and prescribing data, and community, mental health and social care data. The Group were also informed that care.data would be implemented in different phases, and that the first phase would focus on areas such as mandating hospital dataset collection, implementing the community dataset across the country, and accessing primary care prescribing data. These datasets would then be analysed to determine how data could be linked to generate outcome measures. It was noted that data quality varied greatly for some datasets across the country, and one example given cited previous difficulties defining variables consistently within community healthcare data. These difficulties were acknowledged, and it was stated that the initial focus would be on data that could currently be collected, followed by looking at improving the quality of these datasets where possible and then expanding the range of data available. The purpose of general practice data extraction was discussed, and it was noted that justification would need to be given for how data would be used at practice level, CCG level and national level. Suggested uses for data at practice level included identifying at-risk patients, managing morbidity and deprivation, analysing overall practice performance and looking at areas for improvement, while suggested uses at CCG level included monitoring outcomes, carrying out needs assessments, and appraisal of the effectiveness of interventions. The planned safeguards around care.data were described; these included managing any identifiable data within the HSCIC safe haven, ensuring data outputs were anonymised by APPROVED P a g e

4 default (with the exception of direct care applications or instances where explicit consent had been given), and storing, processing and transmitting data securely. It was noted that these would need to be tested against the GPES IG Principles. The next steps for care.data were briefly discussed, and it was noted that following informal consultation with GPs and other commissioners the NHS Commissioning Board would be discussing care.data with the BMA and RCGP, including their Joint GP IT Committee. Following this a customer request would be submitted to the GPES IAG for consideration in February Some general points were raised by IAG members, such as the lack of data attribution within healthcare data, links with public health, and the possible future requirement to share healthcare data within the European Union. A query was raised regarding whether care.data would request data on a reactive (i.e. as required ) basis, or if data would be warehoused for a long period of time in order to address future requirements. It was noted that the NHS Commissioning Board were aware of the need to justify how long data would be retained for and what purposes it would be used for, and while this had not yet been agreed that this would be finalised before a customer request was submitted to the IAG for consideration. It was also asked whether it would be appropriate to use data that was pseudonymised or encrypted before linkage took place, rather than using identifiable data for data linkage. It was noted that this was being considered, but that no decision had yet been made. Another query focused on the concept of addressing local priorities, and how this could work within the context of a national data extract. It was agreed that this would need to be discussed with the GPES Business Unit. Members also asked where data extracted for direct patient care by the general practice would be stored, and it was noted that this data would be stored securely within the HSCIC for linkage purposes before it was made available to practices. The IAG also queried what information would be made available to patients through care.data, as this had not been explained in detail. It was suggested that this might include information on the effectiveness of treatment and outcomes of particular care pathways, but that this was still under discussion. The NHS Commissioning Board s role in encouraging the use of data to improve patient outcomes was briefly discussed. The Group also noted the important role the IAG could play in providing a public interest perspective on customer requests such as care.data, due to the group s lay membership and the range of stakeholder interests represented. It was agreed that the IAG Secretariat would circulate a copy of the slides. The IAG were thanked for their input, and Jeremy Thorp left the meeting. The IAG were reminded that a customer request for care.data would be produced over the next two months, and that a full IAG pack for this request would be submitted to the IAG in time for discussion at the February meeting, in line with the process followed for the UK Biobank, Learning Disabilities Observatory and QOF 2012/13 customer requirements. Some additional discussions followed regarding the GPES Information Governance Principles and the requirement to update these in line with the Health and Social Care Act. It was noted that the timescales for updating the Information Governance Principles would be APPROVED P a g e

5 affected by the HSCIC Code of Practice for Confidential Data, which was expected to be completed prior to 1 April 2013, as well as the Information Governance Review being led by Dame Fiona Caldicott. A number of broader topics were also briefly discussed, including the differences between data processing and data warehousing, and questions about the references to the potential mandation of data collections under the Health and Social Care Act The IAG Chair left the meeting at this point due to personal circumstances, and the rest of the meeting was chaired by the Vice Chair. Action Reference Action Items Action Owner Deadline 13/12/12-01 IAG Secretariat to circulate care.data presentation slides IAG Secretariat 21/12/2012 Key points from Learning Disabilities Observatory discussions The IAG discussed a number of key points that had been raised during the discussions of the Learning Disabilities Observatory early adopter customer requirement at previous IAG meetings. One topic discussed was the retention of data by data recipients, and how the retention period should be defined for organisations that could be closing down within a fixed time period. It was agreed that controls should always be in place around what would happen to data following the closure of an organisation, such as data transitioning to a successor organisation which would be bound by the same information governance controls around the access and use of data obtained through a GPES extraction. The IAG also agreed the importance of customers always justifying the requested retention period, rather than assuming that data could be kept indefinitely. The importance of only providing customers with the appropriate amount of data, rather than excessive amounts of data not required for the purposes stated in the customer requirement documentation, was also emphasised. The IAG noted that some concerns had been raised regarding the initial methodology proposed in the first version of the Learning Disabilities Observatory customer requirement summary, before this was amended in the customer request submitted to the IAG at their October 2012 meeting. It was emphasised that it would be important when discussing future customer requests for the IAG to be assured that the proposed methodology would be appropriate given the aim of the extraction. In addition the need for access to statistical expertise where required was discussed, and it was noted that for future extractions the GPES Business Unit would embed this in the customer requirement process where appropriate. The IAG also discussed the topic of sampling and how cohorts, particularly control cohorts, could be selected through GPES and what matching criteria could be used. It was noted that matching criteria would be defined by the customer. The possibility of carrying out matching at general practices was raised, but it was noted that this was not possible within the GPES infrastructure. APPROVED P a g e

6 IAG management tasks The IAG Secretariat gave an update on management tasks, including the cancellation of the January IAG meeting, scheduled customer requirements for upcoming meetings and a reminder regarding expenses. It was noted that it might become necessary to schedule additional meetings for the upcoming year, and IAG members requested that as much notice as possible be given for any additional meeting dates. Any other business No other business was raised. APPROVED P a g e