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SHEFFIELD CCG
SELECT COMMITTEE INQUIRY INTO THE SHARING OF PATIENT DATA
19h March 2014; 10.30am – 1pm
Bean Room, 722 Prince of Wales Road
Attendees – Committee Members: C Heatley (CH) (Chair), C Bronsdon (CB), J Buchanon (JB), D Chapman (DC), V Clubb (VCl), J Connolly (JCo), J Curtis (JCu), V Cooper (VCo), I Griffiths (IG), M Sweeney (MS) and P Vivekananda-Schmidt (PVS).Apologies: None
Attendees – Witnesses: J Stubbs (JS) and W Lumb (WL)
Observers: J Hart (JH).
Inquiry Manager: N Allan-Smith (NAS).
Notes: Kerry Dunne (KD).
Agenda Item
Welcome and Purpose of Meeting
CH welcomed all to the meeting and reiterated for those who had not attended before that the Select Committee Inquiry (SCI) audio will be recorded for future reference. CH advised that at this meeting, two of the four witnesses are SCI members. There has already been a huge amount of information from various sources and there is a lot to analyse and draw conclusions from. The main aim of the conclusions would be to describe what the committee found from witness questions and its own deliberations about sharing patient information. The expectations for this process and what Phase 2 will be is still unclear. Phase 1 has been good and from the CCG perspective it has been productive. After today and the final report it will not be the end of the SCI, Phase 2 will take the conclusions, the recommendations and actions to bring to Sheffield CCG with the possibility of integrating this nationwide. Once the Stage 1 interim report is written and it is a fair representation of the SCI there maybe the possibility of further witnesses and contributions from other people with expertise in Stage 2. At the end of today’s meeting there will be reflection and discussion as to whether this process has been useful.
First Witness – Dr Jo Buchanon and Dr Chris Bronsdon
CH asked Dr Jo Buchanon and Dr Chris Bronsdon, GPs and SCI Members:
What practical changes are required to facilitate the end-to-end consent-to-sharing process and make it easier and safer to carry out? This could include changes to GP communications, training, current record sharing model, IT systems, ways of working and support for GPs.
Do Practice Caldicott Guardians understand their role as agents of safe sharing practice?
If sharing is made easier for GPs, what else do we need to do to change GPs’ hearts and minds on data sharing for patient care purposes?
JB advised the group that her ideas maybe different to CB’s. To put her ideas in context; a GP in the public sector is often resistant to extra work, new terms and conditions can’t be forced on GPs as they have the right to choose and do the right thing as they see it. To change the hearts and minds of GPs there needs to be clear communication and emphasis that we are only talking about sharing with health professionals who are treating the patient, not a care.data type of situation. Patients have repeatedly told us that they expect the sharing of data and they expect trust in the system and not misuse of information.Unlike the vocal minority, most trust the system. Inappropriate use of data is a sackable offence and people have been sacked for that reason. Secondary care sharing means a view only system using the SystmOne viewer and EMIS equivalent. Sharing would significantly improve patient care. Patientswill be able to see who checked their records. It is the patient’s record, not the GP record. The GP practice can see the records and obtain consent. The practicalities of obtaining consent needs to be examined. Margaret Ainger raised a good point in her written evidence regarding new-borns and whether consent can be obtained at birth. The consent could be given at the hospital at point of access. Other practicalities, which refer mainly to SystmOne,are inappropriate coding in the summary which can create an unwieldy or confusing summary containing inappropriate data. If something is in the wrong place then the original person has to remove it. It is important to realise that an entry in the patient’s record is not a reliable method of communicating with another health professional. That person may have filters on which would exclude entries not made in the practice. There are specific issues in Sheffield with the Health Care Visitor record which has recently been transferred to SystmOne. How to convey the message also needs addressing. It should start at the top by convincing the CCG Locality Executive Groups followed by GP leaders. There should be a slow drip of balanced information which explains the need to share and the checks and balances to prevent abuse.A slot in the relevant Protected Learning Initiative (PLIs), for example Rheumatology where patients are receiving shared care and the case for sharing is well illustrated.Thevoice of the patient is powerful as is that of the secondary care clinician particularly if they can quote examples when sharing has been useful. The Practice Nurse forum, Practice Managers and admin staff are all change agents too. Finally, a record with entries for multiple professionals is a complex thing and we need to remember that sharing is not a panacea for our problems with communication.
Follow up questions from the Committee:
DC wanted to clarify that the data in the records is owned by the original author. The auditor, secretary or Caldicott guardians will have the authority to change the records for data protection.
CH added that this is a real issue. For example, Intermediate Care sometimes changes a patient’s repeat prescriptions and the GP will have a duplicate list but cannot change some of these prescriptions. It is an issue that is difficult to overcome. If a Quality and Outcomes Framework (QOF) indicator has the wrong code for high blood pressure the whole process has to start again.
DC advised that the law is strict on how changes to records have to happen.
JCo advised thaton SystmOne corrections are possible. For example if ‘hip’ is entered instead of ‘knee’ the inputter would have to give a reason for the change to ‘knee’ but it can be changed. This is not possible in shared care, for example if a GP measures a patient’s blood pressure and the measurements are in a good range but a District Nurse measures the patient the following week and they are not in good range, the GP cannot change the District Nurse’s input as they have the right to put their entry in. If it is wrong then it can be marked as an error, it is very unusual that any records are actually removed.
CB added that the content system does work but thesummary is more of a concern. The GP summary is more rigorous and there is a concern that when sharing is made possible junk information can be entered.
JCo responded that this is a data quality and training issue. If something is in the summary it is worth coding but can be less useful. Some are trained to know that a sick note should be a code but diabetes should be in the summary.
MSadvised that EMIS is different. On EMIS everyone has their own record. For example a Community Nurse enters one thing on the Community Nursing record and the GP enters different information on the GP record. The GP can update the GP record, but not the Community Nursing record.
JB added that this is a GP record not an NHS record.
MC responded that the records are shared but the individual user has their own record.
CH advised that there are two models; either inviting another to look at the records in a Message Interoperability Gateway (MIG) system or similar or a single record that all can access. There are two systems in Sheffield and we must work with both.
DC enquired whether Sheffield CCG had taken away the idea of a single record.
CH responded that he does not know the full details but the idea of a single record has not been achieved.
JCo advised that the NHS believes that competition between system providers helps improve the systems. In Scotland providers didn’t vie to compete. In England GP practices are given the choice from a list of approved suppliers and those suppliers compete. The English GP systems are better than elsewhere. They are not perfect but they are still better than other countries.
VCl stated that he agrees with JB. There needs to be data quality training for both SystmOne and EMIS. The pages of Intermediate Care records show that often accuracy can be questioned. Some people are not sure how to write on SystmOne. If the shared record was view only this wouldn’t be a problem. The issue of how to decide who uses the records can also be questioned and who makes this decision is important, would the patient decide who the record is shared with or would the GP gain consent to share to all.
JB added that the record would be shared mostly within a health context andwould not touch Social Care. JB felt that this is a different conversation for a different group with a different view of confidentiality. The view is the same across the Healthcare system and there needsto be full understanding of the sharing of patient data before sharing with Social Care.
CH asked whether this could be explored. CH asked JCu what his view was on the Social Care attitude towards confidentiality.CH asked how shared care with both the Social and Health system has shaped Social Care’s view regarding medical records.
JCu introduced himself as a project manager for improving Information Management working with the Information Commissioner’s Office(ICO). JCu explained that the public expect information sharing will be appropriate, legal and lawful when required. Both knowledge and understanding are important. JCu advised that it is important to ensure case workers and other professionals have a level of appropriate information to make effective decisions. It is a complex situation. Bradford University investigated cultures and ways of working and examined the slightly different perspectives on information sharing, policies and procedures. The SCI should consider the risk elements and consequences of not sharing. It is key to understand where the appropriate information is shared and the effect of this on the wellbeing of individual. If a person is at risk of harm, a medical professional usesan override to access information as this information must be shared or the person remains at risk. The public perspective is if my father is ill and someone can make a difference, whether working within Healthcare or Sheffield City Council, I would expect all the appropriate information to be shared across professionals to better the outcome of my father.
CH explained thatsome years ago he read the standard form for referring into Social Services. It was the first time he encountered explicit consent. The formstatedthat verbal or written consent is required, ideally written, and invited the GP to provide a medical summary to Social Services. Social Services are now receiving parts of the patient’s medical record; how useful has this been? Social Services have a limited view of the record but CH questioned whether JCu could outline the advantages of access to this view.
JCu responded that it is hard for him to say as he does not work within the service area but more within knowledge and information management. From his perspective it is clear why sharing is important and for what purpose. Sharing the medical record can often enable Social Services to gain a greater understanding of the client and provide their service at an earlier stage. The records support outcomes. The information provided by Healthcare affects the work undertaken by Social Services and helps avoid other issues, more expense and, from a customer point of view, it is a more appropriate service at an earlier stage. The patient’s medical record provides a richer understanding of the patient’s background which can lead to different and better responses. JCu stated that from his perspective if the sharing of patient data is appropriate, secure and lawful it enables a richer understanding of the individual andimprovestheir outcomes. There must be no misinterpretation and complete clarity regarding consent and sharing. The Public Sector codes, policies and procedures for record sharing are different to the Health service for different reasons. The Centre of Excellence for Information Sharing website produces national policies but this is appropriate information on sharing. It is early days with health records. The logical data needs, lawful processes and receiver understanding of information needs to be evaluated with no misunderstanding.
JSt added that it had occurred to her that a piece of work regarding integratingHealth and Social Care services would impact data sharing. Giving patients the choice of services.
CH responded that sharing data would be fundamental to the process of Health and Social Care integration.
CB agreed with JB. The role of the Caldicott Guardians needs addressing as their importance to the sharing of patient data has little understanding. CB added that he did not understand the emphasis of the Caldicott Guardian role, even though he is the IT lead at his practice, until he came to the SCI.CB knows that confidential notes on patient records are a huge clinical benefit to appropriate sharing. Conversely, not appropriately sharing patient records and information can lead to a huge clinical risk. CB wondered if the TPP sharing model can be changed buthe had not used EMIS. If medical professionals use the termE-Notes instead of GP record this would clarify that the records are the patient’s NHS record. If it is the patient’s record then CB questioned why the patient is not given authority to give consent at point of delivery of care. Regarding the scenario that CH presented at the first SCI, for Ethel any doctor can view her record; if she has the capacity she should be able to say any medical professional can view her record. CB questioned why the GP is used in this process at all; as a GP he questioned why he should be involved.There is already an emergency override in place and a comment model. SystmOne Viewer is used widely in Out of Hours and A&E and there is no sense for not viewing documents; it is not against Caldicott. If a patient agrees to consent, the full notes should be viewable by the consultant. CB suspected that there are more opinions. Appropriate sharing as raised by Margaret Ainger in her written evidence, adds a risk if health visitors add notes for their information. CB added that medical professionals should still communicate and IT is not the main way of communication. If therecord becoming accessible to all leads toprofessionals not speaking with each other then it has not been done right. Health visitors are part of the primary care unit and all professionals working with a patient’s care should be able toview all records for that patient. CB stated that his mind has been changed to give patients full consent at point of care. To change GP hearts and minds it is important to show that there are clear clinical benefits, if GPs see this then they will want this. During the majority of consultationsit would not be relevant to bring up sharing records and it is not realistic to tack on another thing at every consultation. If a patient goes to their GP with earache during the day, but has chest pain at midnight when the practice is closed, of course CB would want A&E to read the notes. CB added that he does ask for consent andhe does share records when referring. Training is needed and questions need to be asked as to whether the current sharing model is wrong. There needs to be a change of culture. This has become a revelation when moving from paper to electronic records. If the sharing of patient records is safe and appropriate then there is a risk in not sharing and this is the greatest concern. There is a danger of scandals such as the death of Baby P. The main question that needs to be asked is why we are not already sharing records.
JCu added that, based on his experience, confidence needs to be built on what can or cannot be shared. Workshops would be a good way to help with this but it is challenging. There can be too much guidance and policies for each different sector. JCu was also mindful that if the patient does not give consent and declines sharing, the ICO states that this must be clear in their record. From a risk point of view it needs to be weighed whether sharing improves the outcomes for the individual that needs further care. Sharing information early can also reduce additional expenses.
CH referred back to the original evidence of thefirst session where it was highlighted why sharing is a good thing. CH stated that it is obvious to the group but it is anecdotal. CH asked whether more evidence is needed. With so many Baby P type reviews that highlight the problems of not sharing is an evidence based approach required?
JCo added that the report by Lord Laming underlined that a vulnerable child surrounded by bad adults was let down by Health and Social Care. It stated that the lack of integration and communication caused this failure. When the amount of contact with Health and Social Care was reported in the media, anyone who worked within the system could read this and agree that this happens. Individuals write down informationsolely for their own purposes but this could be improved. GPs in Sheffield still have difficulties sharing child data with health visitors. Specifically these conversations have not been had so when were GPs in Sheffield told to share children’s data?