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SHEFFIELD CCG
SELECT COMMITTEE INQUIRY INTO THE SHARING OF PATIENT DATA
12h 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 (JC), V Cooper (VCo), I Griffiths (IG), M Sweeney (MS) and
P Vivekananda-Schmidt (PVS) John Curtis (JCu) Matt Sweeney (MS)
Apologies: None
Attendees – Witnesses: A Gill (AG), J Mitchell (JM), G Pick (GP), R Pierce (RP), H Rowe (HR), J
Wilshaw (JW) and S Withers (SW).
Observers: J Hart (JH) and T Tailor (TT).
Inquiry Manager: N Allan-Smith (NAS).
Notes: Kerry Dunne (KD).
Agenda Item
Welcome and Purpose of Meeting
CH welcomed the group to the meeting and due to new members arriving to the committee reiterated
that the meetings are being recorded for transcription purposes but if anyone would like to raise any
issue regarding this they will be able to. CH advised that the minutes being prepared are detailed and
will be made available publicly, therefore if there are any comments or amendments to be made or if
there is anything that anyone would not like to be made the public domain please contact NAS or KD to
organise this. CH reminded the group that the aim of the SCI is to bring together recommendations.
CH stated that it is already clear to most that more action is required for sharing to happen and in order
to have free and open sharing Sheffield CCG will need confidence from patients and professionals with
the right information.
Hearing
CH summarised the last meetings discussion as to why sharing is a value for both patients and
professionals, what the fundamental rights are and the ethics surrounding sharing patient data. The
concerns made were what the information will be used for and whether misappropriate use would
happen, what the record contains and who it belongs to. Today the SCI will be attempting to
understand clearly what the current processes are and what they should be in the future in order for
both patient and professional confidence to be obtained, what the consent process should be and how
to make this second nature in the healthcare profession.
First Witness – Rebecca Pierce & John Wilshaw
CH asked Rebecca Pierce, application specialist and John Wilshaw, Interim Technical Officer for West
and South Yorkshire and Bassetlaw Commissioning Support Unit and Data Management Integration
Centre (DMIC) service lead:
How can we improve the patient’s confidence in the process of consent?
How far should we go in providing information to the public and patients to obtain consent?
JW wished to set the context before responding directly to the questions asked. RP works with GP
practices and sees them from a primary care point of view. JW implements data processing while being
constrained by the 2012 NHS Act and various associated legislation. JW works from a national view
and is mainly secondary care. He has been involved in the care.data experience from a data point of
view. The CSU has nine data management integration centres.
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CH wished to clarify that the purpose of the SCI is to investigate point of care data and not care.data.
JW has attended the Health Select Committee with Tim Kelsey. JW gathered from this that the NHS
Summary Care Record letter sent out nationally worked reasonably well and this process was not
followed with care.data. JW could see the failure to properly consult with patients, and the general
feeling was negative.
CH enquired how to improve the process of consent for point of care data.
JW advised that the 2012 NHS Act has made this issue more complex. Restrictions were set that were
not in place beforehand and this stressed the system. From a patient point of view these new rules are
complicated and it makes it impossible to understand what consent really means.
CH understood that JW worked with organisations to feed information and data into projects and asked
JW and RP if a GP were to refer to Physiotherapy how would they perceive this should be done.
RP explained that this should be an easy conversation with most of the patient population. RP believed
herself to be a digital citizen as her information can be accessed via Google, Amazon, etc. As a patient
RP would agree to the sharing of her health record and would not see this as a problem. RP stated that
she would not feel reliable enough to hold this information herself. If a GP asked to share RP’s data
she would reply that this was fine. RP advised that people should not shy away from these
conversations and there needs to be an open discussion.
Follow up questions from the Committee:
CB asked RP the percentage of Sheffield GP practices on TPP or EMIS.
RP responded that 70 of 88 practices are on SystmOne and the other 18 are on EMIS. 12 of the 18
practices on EMIS are currently using EMIS Web with the remainder on PCS with a plan to migrate.
CB enquired that of those, what the range of patient record sharing is.
RP advised that less than 25% are documented to share their patient records and advised that this
analysis is not regularly performed so the figures may not be exact. RP advised that the migration is
still recent and so it is difficult to compare one practice percentages of patient consent to another. The
longer the practice has used the system the more likely their percentage would be higher as they have
the understanding of the system to acquire consent. Individual GPs must choose to ask their patient to
share their records as this question is not mandatory.
JC asked whether this would be explicit in the system or whether training on consent would need to be
performed.
RP replied that it is not black and white and added that there needs to be a targeting of the right
information to the right person. There is a possibility that not every GP has thought of their own
personal script to use when asking a patient for consent. There was a Protected Learning Initiative
(PLI) event held two to three years ago regarding this issue.
JB stated that there is an attitude problem with some GPs and asked RP what security is available of
the data, the checks and balances to ensure that people are not accessing the records without
appropriate need. JB asked whether there is an audit and how this could be checked and who would
do the checking.
RP responded that personally she would not be able to access patient details and perform the type of
audit described. This would have to be done practice by practice possibly through the Caldicott
guardians. The N3 security level means that anyone with access to a Smart Card would be able to
access the records.
JB stated that the management of the information and the auditing process would not be difficult in a
smaller organisation, such as a GP practice, but a SystmOne viewer in a larger organisation, such as
the hospital trust, can access anything and this would be hard to regulate.
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RP advised that she does not work with hospitals and has no connection with them so could not
comment. RP described the system that they are looking to implement that would let the patient be
able to access their own records, hopefully by 2015.
JC added that the patient interface currently has the ability to order repeat prescriptions or book
appointments. Once the practices switch on, the patient would be given a username and password,
would verify that they are the patient and could click a tab to see who access their records and when.
They could then contact the data controller or Caldicott guardian if they found any discrepancy or
would like to question access of their records.
CH stated that, with no disrespect, the process of gaining consent is currently quite messy. Have GP
practices asked RP to explain patient consent before and how would you explain this to them?
RP used a demonstration of a half-full glass of water. The glass being the health record and the
information inside, the water. A health professional can only add to the information and can only view it
with consent. If a professional wants the record to be added to they could only do so with patient
consent.
IG questioned whether in this demonstration the consent would be implied and not explicit.
RP informed the group that, as she understood it, the policy for implied consent is that it should only be
obtained when there is a valid reason to not receive explicit consent.
IG gave an example that if a patient was referred by their GP to a hospital and the GP sent all the
information relevant to the referral without telling the patient details these referral letters are read by
administrators, junior doctors, etc. before being received by the consultant. Once these records are in
the system 15 to 100 people could be involved in the care, many of this as paper records. The patient
did not offer their consent to begin with so would this be considered explicit?
RP replied that from a purely data point of view a read code (which is a code used in patient records for
reporting) is available for patient consent that can be audited by the Care Quality Commission. After a
bit of confusion regarding the different systems and records available RP advised that the idea behind
one record and one system is just not applicable as yet and would be under the IT strategy which is
outside of her remit. If the question is regarding separate systems and interoperability then there is
currently little availability to how different systems can communicate with each other. There is very little
sharing of patient data outside of the individual practices, the only exception being the Summary Care
Record which will soon be re-badged as the Emergency Care Record.
CB stated that if a GP referred a patient to secondary care with arthritis in their knee the consultant
would expect the GP to give relevant information. Under the Caldicott Review this came under the
bracket of ‘No surprises’. Would there be any benefit in the secondary care consultant knowing about
this patient’s previous abortion?
IG replied that the consultant would know about the abortion if the patient went to the same hospital for
both procedures.
CB agreed in principal but stated that different departments keep different records, so Rheumatology
would not have access to the Gynaecology records.
CH raised a concern from the Caldicott review that consent should be obtained before the whole record
is shared. In regard to IG’s description of patient referral a letter to the consultant might have
unnecessary information. This is the standard referral process currently. Caldicott recommends that
explicit consent is required in these situations.
AG stated that a patient would be astonished that the information is not already shared with the
hospital. The patient assumes that the GP knows what the hospital does and vice versa. With regard to
the consultant finding out that the patient had an abortion, the consultant will not care unless it is
important to the patient’s treatment.
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HR referred to last week’s meeting and the sharing of information digitally. It would be less time
consuming and there would be no letter trail as described before when an admin or junior doctor would
be receiving the letter before the consultant. The referral would go straight from the GP practice to the
consultant. The crucial thing is that out of hours information that is relevant and can help the patient
would be available.
CH added that A&E have access to the SystmOne Viewer but if the practice did not obtain patient
consent they would not be able to see the records anyway. If the patient had not agreed to share their
records in the practice then these could not been seen by the hospital even if the patient wanted the
records shared when in hospital.
JC responded that there is a consent override. If no consent is given in the practice but the patient is
unconscious or there to give explicit consent in the hospital then the consent is overridden and a
message is sent to the data controller at the relevant unit. This way the data controller can investigate if
there are any problems with the consent override. Hospitals have information governance training
similar to smaller organisations. Just because a hospital is larger it does not mean that people should
trust them less.
DC asked that the group were clear about the importance of trust over understanding with regards to
sharing. It is important to communicate with people who do not trust the sharing of information, not
those who are willing or IT savvy. The older generation, for example, would not be happy and would
not trust the system easily.
Second Witness – Helen Rowe & Geoff Pick
CH asked Helen Rowe and Geoff Pick, patient representatives:
How can we improve the patient’s confidence in the process of consent?
How far should we go in providing information to the public and patients to obtain consent?
GP gave a scenario where a patient tried to access their money at the bank but were unable to due to
a computer problem. If they then went to their registered practice and their GP asked them to share
their patient data electronically the patient would question the security of the medical data. There
needs to be an understanding of technical information by both GPs and patients. The media’s negative
coverage of incidents such as the BPAS abortion clinic being hacked does not help this process. GP
said that his own concern is not the medical information but the enablement of his care. The amount of
information, not just the clinician’s information, but the follow-up, the equipment and how to get home
from hospital needs to be included in the patient’s record. GP added that his needs are different to
anyone else who has the same condition and that his needs should be in his record. If a patient is on
the same medication for a long time they often don’t know the name of the medication they take. The
information needs to be accessible for both the hospital and the GP; this would save a lot of time
during consultations.
CH understood that there is a concern of security of data but patients also want the healthcare system
to know all of the important information about their medical history. CH asked how the healthcare
system can balance this concern with this need and added how the healthcare system can give
enough people enough confidence to release their information.
DC explained that it is not possible. DC stated that out of the medical professionals at the SCI there
seems to be little understanding of the IT structure and no understanding of the appropriate security
measures, the pathways, the systems, auditing and the approach of sharing data apart from national
guidelines. DC asked how the patient could understand if the medical professionals trying to explain it
to them don’t know.
PVS agreed that it would be difficult to relieve concern if medical professionals have the same
concerns.
DC advised that if a GP knows about the security of the patient information then the patient can
understand.
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PVS added that there is a starting point and medical professionals can work towards full understanding
how to share in an effective, trustworthy way.
CH enquired whether there needs to be a level of understanding of the system. For example many
people can drive a car but do not know how an engine works.
HR responded to the question that being clear means checking understanding. Therefore the language
used must be understood by the recipient, not just as an alternative language but no jargon or
abbreviations. GPs would need to be able to explain the pros and cons of data sharing to patients.
There would need to be confidence in the GP as to whether they know these, perhaps by training
them. HR advised that the security measures and negative outcomes need to be explained. HR
believed that large government commissioned systems have got a bad name, that they cost too much
money without delivering the goods. Systems need to talk to one another, perhaps by using a Babelfish
which is used tremendously in IT but has not been mentioned. These problems are not
insurmountable. With regard to question two HR advised that general awareness would have to be
raised. An explanation and endorsement is needed that the sharing of information is to help the patient
and provide their care effectively. HR urged the group to be proactive, not passive and raise general
awareness by placing notices in practices and getting local radio involved, etc. As CH likened
understanding to a car, HR added that drivers need to know all the requisites and be actively involved
in order to drive. Patients who are registered to GP practices don’t think about the healthcare system
until something happens and they need care. The culture does need changing as currently we do not
have a health service but an illness service.
Follow up questions from the Committee
VCo added that in answer to the second question; go as far as you can. There will be sliding scales on
time, money and staff but it is important to go as far as possible to provide information to the public and
patients in order to obtain consent.
PVS asked how to disseminate this information widely and what should be the content.
VCo replied that as much information as possible should be available and the largest reach and
audience should be targeted.
JW explained, in response to HR’s comments about Babelfish, that his work is joining together the
systems and checking data quality. JW finds that there is confusion on who owns the patient record
with various agencies. There is a difficulty of sharing when agencies believe the records are their own.
Clarity is needed in the NHS as to who owns the records. It is not general across the NHS, perceptions
and facts differ. Because of the central agenda, the whole system is defensive. Money is being spent
on developing systems that are totally secure, some levels of security are above the Ministry of
Defence but this is not publicized as the public would just question the amount of money being spent.
The digital world means that sometimes bad things happen to data but sharing data electronically has
similar issues to paper records as these can be lost or sent somewhere they shouldn’t be.
JC questioned HR’s statement that government funded IT projects do not come up with the goods. The
IT support in primary care is better than anywhere else in the world. EMIS produce excellent software
and TTP coming in later also produce excellent products. It is helpful for patients to have these
companies competing to produce improved software.
HR advised that the comments she made regarding the systems were the general public view and not
necessarily her own.
Third Witness – Dr Anil Gill
CH asked Dr Anil Gill, GP and member of the Right First Time team:
What information needs to be available for effective patient care?
Is it needed in real-time?
What stops GP’s from sharing electronic patient information to support patient care?
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CH stated that the first question has already been covered quite well if AG wished to move to the
second and third questions.
AG responded that there is a need for the information to be in real-time. For complex patients AG
would need the information at his fingertips from what happened that morning, if they went to A&E last
night, whether they visited the pharmacy, etc. The real-time data is useful in order to manage the
patient effectively.
AG responded to the third question by stating that there are currently technical barriers. There are 44
different software systems which all relate to patient care. Integration needs to happen and there has to
be understanding as to where this information will be held. Then there is the ethical barrier.
Follow up questions from the Committee
CH asked why there is a difference of 2-88% consent received in 27 different practices as detailed in
the HASL project that CH shared with the SCI.
AG responded that at his practice they are probably more towards 2% as their practice has been
receiving notification from patients that they do not wish to consent. These are well-informed, educated
patients who are concerned about the healthcare system and the information that is stored. In other
areas this might not be a significant issue.
IG reiterated that based on information gathered, patients already assume that their information is
shared. The implication that AG has responded with is that the engagement of patients giving or not
giving their consent is due to patient groups. IG wanted to challenge this as there is a huge range of
patients in Sheffield and asked if it is not more likely that this is AG’s perception of patient reaction.
CH asked whether this denial of consent is for point of care information or care.data as they are
different issues.
AG responded that he believed it to relate to care.data. They do not want the larger government
database but they expect clinics and consultants to already access their patient information.
CH asked AG why he personally does not explain the point of care data sharing and actively
encourage his patients to agree.
AG responded that it was a time issue.
JB added that the GP attitude needs changing. In order to reveal the GP record, consent needs to be
checked. Most patients would not know that these records are not shared and will consent. GPs are
not using the opportunity of schemes such as care planning to discuss the issue of patient consent.
GPs are reacting to negative press and feel that it is too difficult to battle against this.
PVS discussed the confusion and even lack of education of the purpose of sharing patient data and the
IT system; where and when the information is used.
CB confirmed that a change in culture is needed. The majority of patients are out of the door as quickly
as possible once they are treated. CB felt that taking the time fully explain consent of patient data
sharing would be a change in gears and it would be difficult to do during a consultation, but easier to do
when referring. It would be irrelevant if a patient denied consent during a consultation. Instead of future
patient record sharing it should be for those who need their records sharing immediately.
DC added that there is no panacea. DC advised that he was not trying to generalise or group patients
but the patients that are interested are often the more complex patients. DC would like to be treated as
a person and not a host of symptoms. The more complex patients would benefit from their information
being shared. For the general public they believe that little is wrong with the current system and are not
interested. The more complex patients know already the issues of data sharing.
CH agreed that many things need to be said during a consultation and GPs could query what patient
consent actually achieves. They might feel that this would just be another thing to squeeze into a
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consultation.
JC agreed but advised CB that with complex patients it is worth making the time.
GP agreed and reiterated that this was not a discussion about everybody’s records being immediately
shared but a smaller group that needed their record sharing.
JC added that it would just be to access the record, not transfer it. If healthy, the records would stay
how they are, otherwise patients would not need to consent.
GP stated that some people think that the records stored or transferred must be everybody. But it
should be if there is a need.
CH added that if there was a need, a medical professional would ask the patient for consent.
CB questioned why the current share model is wrong and why GP’s have not had this conversation
before. If a patient presented with an earache and had it treated and then the next day went into A&E
with heart palpitations, would there be a need to involve the GP? CB questioned where the point of
consent is if the GP is not in charge of sharing out and the clinician asks the patient.
AG enquired as to who actually owns the notes. The patient in A&E would want the hospital to see the
notes.
CH replied that this was covered at the last meeting. The traditional view, for paper records, was that
they belonged to the Secretary of State for Health but now the records belong to the patient.
JC added that not all GPs currently know or believe this.
AG stated that it would be irrelevant to ask for consent at every consultation. There are more barriers
apart from the technology. In Sheffield the Right First Time programme is helping to develop the Portal
which uses read-only information. There are many trusts, social services, et al that are large
organisations that are not communicating with the smaller areas; they all don’t talk to each other. Some
GP systems cannot communicate with each other. AG works with 111 for Yorkshire and Humberside
and currently if a patient collapses the paramedics that arrive at the scene are unable to view the
patient’s records.
CB added that currently the information given to these healthcare areas are immediately out of date.
HB asked whether the care planning project contains a question to ask for consent.
CH confirmed that there is.
Fourth Witness – Dr Jonathan Mitchell
CH asked Dr Jonathan Mitchel, Consultant in Mental Health:
Why is mental health information still subject to exclusion when it comes to sharing?
To what extent could the lack of sharing of mental health data affect the quality of patient care?
JM responded that the quick answer to the first question is the stigma and prejudice surrounding
mental health issues.
CH added that behind that, a patient will often be happy to feed information on physical health but not
depression, anxiety, etc. and asked whether this information would be relevant if it is not shared
JM asked whether the system would exclude all mental health information or individual bits.
CH responded the current system is not able to exclude individual bits; the entire record is shared. GPs
often include notes that have mental health coded dialogue and this cannot be selective.
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JM advised the group of an Acute pilot scheme that allows access to the patient’s record through
SystmOne viewer. Mental health is involved in a patient’s overall health and the stigma surrounding
mental health means that a lot of patients do not want their mental health information to be known to
other medical professionals. Certain physical health problems have the same reactions from patients.
The presumption is that with mental health problems the patient does not have the capacity to consent.
The assumption is a barrier. JM argued that sharing the information is important. Mental health and
physical health should not be disconnected. Psychiatrists will often have to contact the GP directly by
telephone to get a full understanding of the patient’s medical history. With paper correspondence there
can be delays, patients often don’t know what medication they’re on. The interaction in important. JM
advised that commonly the patients he sees have the same assumptions as others and believe that
this information is already shared. They question that JM is not able to see when they were last
admitted to hospital or what they discussed with their GP.
JW added that when data is taken out of the GP to a central location a consent filter is applied. The ‘No
Consent Received’ process is run and some records are not taken. Read codes are applied to very
sensitive cases such as sexual health issues or HIV status. Mental health codes, by default, are
excluded from the patient record, which is the same with care.data. From JW’s point of view mental
health and physical health are the same, but mental health has been made more confidential.
CH asked whether this was almost an institutionalised view and asked whether this was the same for
all point of care records.
JW responded that this is the case on some care records, care.data and GPES.
CH added that this illustrates the stigma surrounding mental health compared to physical health.
JM added that Right First Time has been formed because of this. They are trying to integrate the two
and discover the reason for the separation as this creates risk factors for patients. The physical health
may not be taken care of because of mental health issues such as depression or anxiety and mental
health patients might not be treated the same because healthcare professionals might perceive a
physical ailment as a manifestation of the mental health problem.
Follow-up questions from the Committee
JC asked whether JM contacted GPs directly and whether there is a variety of response from them.
JM replied that he routinely talks to GPs and there is a variety of response. During a consultation JM
will go through the information that a GP has sent to him with the patient, and explains that any
information the patient gives to JM will be sent back to the GP unless the patient disagrees. JM could
not think of a time when a GP needed to know some information given to him by a patient and the
patient disagreed to consent. If JM receives explicit consent then the consent override works to same
as with the hospital. Primary care information is passed freely when asked directly, but on occasions
there have been barriers such as a practice only sending the information by fax and requesting
payment for the records. Most of the time, the GP’s understanding of the situation is small and so only
limited information is shared, the full record is not received immediately.
AG added that there is a risk to omission of information especially with JM’s category of patients who
need to know their medications, when they were last at A&E, etc.
CH agreed and added that it is important the other way too.
JC asked what the most seamless exchange of patient records would be.
JM responded that from a personal point of view the best way would be to have a single record for
each patient.
JC agreed in principal. This record would belong to the patient and benefit the patient’s care but
implementing a single record is not yet doable.
IG asked whether the availability of an override system for consent and an auditable trail for records
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would be attractive and practical to psychiatry.
JM responded that it would be both attractive and practical. There is a need for a more complete
routine in the sharing of patient information.
HR pointed out the current strategy of ‘No Health without Mental Health’. Mental health is integral to
physical health and needs to be accepted in the same way.
AG agreed that a single record would be beneficial. The work being carried out in Sheffield on the
read-only Portal would take the Sheffield healthcare system closer to this. All medical professionals
would be able to look at the patient’s records on a read-only basis and this would increase the sharing
of information.
CB added that if a patient attends the Out of Hours service tonight the GP should be able to see this in
the patient’s record tomorrow morning. Other cities are able to do this but not in Sheffield.
IG added that Right First Time is not just for GP practices, it is a single point of access for hospitals,
social services et al who all work on different systems.
VCl agreed that a single patient record sounds good but it would probably be read-only and reiterated
that sharing should be two-way.
CH added that some parts of the record could be made private
JM added that there is one other issue and that is the culture. Up until recently when the Children’s
Hospital referred their patients to Psychiatry once they became an adult they would refuse to share
their information until the patient had signed a written consent form. Even now, some staff at the
Children’s Hospital believe that this is still the case.
JB added that a single patient record would be wonderful but a standard would have to be maintained.
The more people that input information onto a record the harder it is to maintain usable data. Readonly maybe a good start.
VCl responded that this is possibly a training issue.
JM added that there might be a lot of information that he would need but other medical professionals
would not.
MS described the MIG (Medical Interoperability Gateway). All systems would lead to MIG and every
service outside of the GP practice could see the GP record. When a practice or out of hours service
purchases the MIG, the sharing of patient data is on an opt-out basis. A general awareness campaign
was launched to inform patients. The Out of Hours service would still ask the patient for permission to
access their GP record. There is a two-way consent both at practice level and outside. Detailed records
such as a patient summary, medications and investigations are shown. With Version 2 the data would
be more structured, things like End of Life Initiatives could be created and viewed and updates given.
CH stated that this level of functionality works well. It is something the SCI has discussed but did not
believe was possible.
?? Does EMIS have the facility to share? Other health visitors on SystmOne and EMIS have the
capacity. Can they be shared across EMIS to SystmOne?
MS explained that currently it is possible to share EMIS Web patient records with other systems. If a
health visitor wishes to see a patient’s record this is done on an opt-out basis but there could be a
better sharing model.
CB asked about the consent model.
Fifth Witness – Sarah Withers
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CH asked Sarah Withers, Consultant Physiotherapist and Clinical Lead for Musculoskeletal Services:
How can we get to a point where the sharing of patient information becomes as much second nature to
GP’s as it is to most of the community services or secondary care?
SW explained that the GP practices need to know how sharing of patient information needs to be. In
SW’s opinion, some things need to be improved in both the common service and with the Allied Health
Professionals (AHB). The AHB are thirteen miscellaneous groups of healthcare professionals which
are still being formally identified but include Occupational Therapy and Physiotherapy. SW
underpinned that the professional culture and behaviours surrounding the approach to data sharing
need to be changed. The medical professional culture needs to identify the key drives to obtain patient
consent while identifying the barriers and addressing them. The AHB historically understood that
influence and control was needed to access patient records and created this influence by sharing their
information back to primary care. Data sharing is not second nature but this problem can be overcome;
behaviours can change. The AHB have been given confidence and expectations which were not there
before. The current culture takes away from the issues of the processes and systems and gets in the
way. The core values are important, other than the systems, process and vulnerabilities. The
understanding needs to be two-way. It is a cliché but the journey will be long and twisted. Only when
the drives are recognised will healthcare professionals know where they want to go.
Follow-up questions from the Committee
HR asked whether the sharing of patient data with the AHB, particularly with Physiotherapy, would
improve the current situation. For example Sheffield is 17% higher than the nationwide average for hip
fractures, would this be addressed if patient information is shared?
SW replied that, from her own experience, some problems would be noticed sooner and the hope is
that the impact would be felt widely.
CH said that GPs can often see the changes to their patients in real-time. The interaction with the
patient during the Physiotherapy sessions can be seen at the GP’s consultation. The GP can see the
expectations and can anticipate the purposes.
SW replied that it is difficult to represent everyone from the AHB but real-time dialogue with primary
care is still a barrier and it is needed. From SW’s point of view it is difficult to contact a GP with specific
questions.
CH asked how helpful it would be for SW to access the full patient record.
SW replied that it is very helpful. From a safety aspect the GPs do not understand the breadth of the
information which might prove useful. If SW had access to the full record she would be able to pull out
what is needed. Patients are evolving pictures and in order to provide effective care a medical
professional will need to know that they are not just repeating procedures that have already been
performed.
CB asked what percentage of records SW can see in full and whether there had been a situation where
SW felt that she should not have or did not want to read anything in those records.
SW replied that it would be difficult to give a percentage but roughly a third of her referrals provide a full
record. There is a lot of sharing out but not sharing in.
CH stated that this could be because the consent is not set which could stem from individual customs
in each practice.
SW added that she was unaware of the consent override and queried whether this would be for
emergency use only. When consulting with patients, SW would access the record before the patient
entered the room and then would always ask the patient for consent and would mark any consultation
private if the patient wished that.
CB asked whether there would be a direct impact in being able to access the full record.
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SW replied that there would be. GPs do not consider whether some things are important, such as a
report from Urology can directly affect the patient care for Physiotherapy and SW would not expect
them to fully understand just as she does not fully understand the information that they require.
JW asked about removing the filter and directly accessing the results. The GP does not always know
the relevance of such information.
VCl agreed. If the access is there SW could see that the patient spoke to the GP yesterday, see the
comments that the GP wrote on their record. There needs to be a dialogue. The efficiency would be
greater too, especially for older patients, patients who are referred to more than one type of consultant.
These consultants have no access to each other’s records which is a problem. A patient could be
cared for by two consultants offering the same treatment without anyone knowing about it. The sharing
of patient information and not knowing what is or is not relevant is an issue.
JC added that it is also unsafe.
SW mentioned the efficiency of data sharing.
CH said that the AHB seem to routinely get consent and also mark consultations as private when
asked which GPs do not do and queried whether training is required to help GPs. CH asked SW what
the importance of patient consent is for AHB.
SW replied that historically being able to view patient records was seen as a privilege for the AHB.
Patients often don’t expect a Physiotherapist to be able to view their whole record; therefore the
process of getting full disclosure and consent was put into place early on.
CB asked who asks for consent and when is it given. CB also asked how many patients decline access
to their medical records.
SW replied that the clinician, at the beginning of the consultation, sees a pop-up on screen that asks if
the patient’s consent has been given. They can cancel this pop-up but it is good practice and is
encouraged to ask the patients before reading the full record. Usually before a consultation, SW will
read the background of the patient, shut down the record and then when the patient is in the room they
can be asked for consent. There is a personal script that SW uses that has become a part of her
introduction to the consultation and no longer breaks the flow. The system is not perfect but the
majority of the patients will be asked for consent to view their records.
JC added that having the conversation early into the consultation was a good idea and offered the
patient choices over their treatment.
SW added that very few patients say no. There are two separate consent questions, both sharing in
and sharing out. It works both ways.
AOB
CH thanked all the witnesses for attending and stated that their answers have been very useful. Again
the strong opinion has emerged that most patients assume that these records are already being
shared, albeit with the background of negative media and concerns over security.
Discussion of Next Meeting – 19th March 2014
CH advised the group that by the end of the next meeting recommendations will be made for Sheffield
CCG which could spread nationally and asked the group if there was one recommendation that they
could make, what would it be?
JB answered that for her it would be how to win the hearts and minds of the GPs about sharing. JB felt
that she had been won over by attending the SCI but it was important to spread this message out to all.
JB added that she was curious as to how the practices who had received 88% patient consent have
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done so. The minimum required would be to assure GPs and to inform them that when they refer, ask
for patient consent to share their record.
JC added that the consensus is that the status quo needs to change direction. Due to possibly being
unable to attend the next SCI he has drafted his own recommendation. JC recommended that in the
Sheffield CCG area, if patients are both well-informed and have given explicit consent, health and
social care data could, should or must be made available seamlessly across organisational boundaries,
in a robust and timely manner, wherever and whenever such sharing is expected to improve the safety,
quality and/or patient experience of the care provided. Being able to pin down everything in three
weeks is not possible but a plan should be agreed. Guidance can be sent to clinicians to let them
know.
CB agreed and added that the record sharing model is currently wrong and he is concerned that
currently it is unsafe and not good clinical practice.
GP added that it is important that somewhere the aftercare information, the follow-on from the clinical
information, needs to be added to the record.
DC responded that it is not just the generic record, not just the GP. People forget that the switch to
electronic made the Data Protection Act relevant. The fact that the patient owns their record is often
forgotten but it is set in stone. There should really be an opt-in principal as it has already been proven
that opt-out is unsound and can be questioned. There is only a real positive in opt-in. DC understood
why opt-out has been used; but the 2012 NHS Act should be taken into account. There is not a
panacea and no ‘one size fits all’. Once a reasonable system is found then that is good enough.
VCo believed that it would be important for all to be well-informed. The SCI will need to know what
information patients need and how to provide it.
VCl added that the use of computer systems and how to provide sure consent would be an education
to dispel myth and concern. The healthcare professionals must be comfortable talking to patients about
these concerns.
PVS added that obtaining consent is not just about informing the patient. The key information must be
told to the GP as to what to discuss. The GP has to understand and convey to their patient that it is
about point of care and is in the best interest of the patient. It would be beneficial if guidance provided
to clinicians is standardized.
VCl said how to educate patients on whether there would be an audit, why the healthcare professional
needs to look at their record, etc. needs to be investigated. Engaging the patient is important.
DC advised that if the patient is given access to their record they could audit themselves.
JW asked why the patient could not give consent to him.
PVS added that there may need to be both sharing out and sharing in at point of care; the availability of
the shared records at each point of care facilitates patient choice.
HR emphasised that everyone needs education. If the patient’s record is passed from the AHB to the
patients to the GPs reams of writing would be in the records with information that others do not need to
know. The records need to be succinct but not exclude anything important.
IG asked how to share everything that has been heard at the SCI. IG stated that the group are in a
privileged position to be able to hear all of this information. The group’s views and issues need to be
captured and even if there are disagreements, the recommendations need to be fair. IG added one key
thing is that often people have been surprised as to how the healthcare service currently works. There
needs to be a change in approach to consent from what happens now. Pursuing the idea of perfect
consent and a different consent model in principle is useful but practical suggestions are needed.
MS said that from his point of view the technical solution causes confusion and there are obvious
technical barriers but the solutions are there. MIG is an answer to the sharing of system data and MS
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would be more than happy to provide further information.
DV reiterated that the NHS often has problems with purchasing and providing systems and cautioned
the SCI that money should not be thrown in a lot of different directions.
SW stated that it was encouraging to see people want to share their patient data.
VCl added that the problems are what consent means, whether there are any time constraints and how
to educate a range of people.
PVS wanted to know the differences between the practices who obtained 2% consent and 88%.
IG responded that it is likely that some practices actively sought consent, for example the incentive to
ask for patient consent for Flu jabs had a very high response.
VCl added that there are practicalities to take into account. If it were done and done badly there would
be a lack of engagement. VCl explained that there are cultural barriers to overcome and asked whether
there could be incentives.
NAS advised the group that he is in contact with Torbay and Cumbria who have been invited to the
next meeting. Tim Kelsey’s team and members of the Caldicott review have also been approached.
NAS asked the group to think about questions for these levels of people.
JB cautioned against too many witnesses and added that time is needed after the hearing to form
recommendations.
PVS added that education and training is required as there seems to be some confusion about sharing
during consultations. What the education consists of and how to disseminate this to patients needs to
be thought of at the next meeting.
Date and Time of Next Meeting
Wednesday 19th March 2014 10am –1pm, Bean Room, 722 Prince of Wales Road