Single Shared Records are they an idea whose time has come

1
Single Shared Recordsare they an idea whose time
has come?

• Clinical governance and other issues concerning
  the SSEPR
• Single Shared Electronic Patient Record
• Mary Hawking GP UKCHIP level 3
• NHS Faculty of Health Informatics
• PHCSG July 2008
• This presentation has more background in the Notes

2
NPfIT and the Detailed Care Record

• Detailed Care Record
• Part of the NHS Care Records Service, held in a
  data centre operated by one of the Local Service
  Providers and accessible to a patients GP and in
  community and hospital care settings.
• The Detailed Care Record is intended to be the
  single fully detailed record of a patients
  medical history and treatment.
• NAO. The National Programme for IT in the NHS
  Progress since 2006

3
Advantages of SSEPR

• All information shared in one place
• Available at any point of care
• Always up to date
• Available for administration and audit
• All records available for research and public
  health
• What are we waiting for? Its the answer to all
  our problems!
• But there are a few issues needing sorting first
  ..

4
The Wicked Questions which have to be addressed

• Confidentiality
• What is it if you have a single record?
• What are the mechanisms for deciding who has the
  authority to release information?
• Security
• There are established NHS procedures and guidance
• In an SSEPR, who is responsible for implementing
  them?
• Clinical Governance
• Who controls data quality?
• Who can enter information?
• Who can edit existing information, from their own
  or other organisations?
• How do you manage prescribing?
• Who is the Data Controller and who is legally
  liable?
• Fitness for purpose
• Different organisations have different record
  needs
• Presentation of data in different clinical
  settings
• Ensuring that all organisations contribute
  everything to the SSEPR
• Satisfying the audit and reporting needs and
  making sure other organisations dont have an
  adverse effect. e.g. QOF and CHS data
  requirements.
• Conformity to legal, ethical and professional
  requirements.
• Education, education, education!

5
Confidentiality, sharing and patient consent

• Do patients know whether they are in a SSEPR
  practice and what all this means for them?
• How does this relate to legal and professional
  requirements for HCPs?
• In an SSEPR, what does refusal to share mean?

6
Access and sharing for TPP R3.01

• 1. Access to patient records is controlled by
• a) patient registrations i.e. the patient must
  have an active
• registration at the unit you work in
  e.g. Podiatry (who I can see)
• b) having a valid smartcard to access the system
  and a valid
• job role
• c) RBAC will to a certain extent control what
  part of the record you can
  access based on your RBAC rights (what I can do
  and how I can do it)
• 2. Sharing of patient data/limiting information
  sharing is
• controlled by
• a) only making data available to those users
  currently providing you with care
  through an active patient registration (analogous
  to LRS)
• b) support for consent to share/dissent to share
  flag held in PDS
• c) TPP privacy markings either marking the
  whole unit as private to all other units
  providing you with care, or marking individual
  events as private to all other units providing
  you with care (analogous to sealed envelopes)

7
Clinical governance in SSEPR

• Who can make entries, especially diagnoses?
• Who can cancel or correct errors made by other
  contributors?
• How do you manage prescribing?
• How is responsibility for action managed?
• Who is legally liable?
• Who is the Data Controller?

8
Managing data entry in an SSEPR

• A SSEPR is a single record, so who owns the
  data in it?
• If it is the person/organisation making the
  entry, what happens if it is wrong/ evolves into
  something else/ will need changing because of the
  nature of the data (prescribing)?
• If there is a single person/organisation in
  control, e.g. the GP, is it safe to allow
  information entered in a different situation for
  different purposes to be altered?
• If anyone can alter anyone elses entries, will
  the SSEPR potentially be so degraded as to make
  it potentially dangerous for patient care?
• What are the legal and safety implications?

9
Managing medication

• Medication is an area where it is known that
  treatment started in one organisation will be
  changed in another.
• How is this managed in a SSEPR?
• Organisationally
• Legally
• By software
• Who is responsible for the overall management?
• Patients often have more than one condition
• Independent prescribers tend to be specialised in
  one condition
• If a new medication is started, it is probable
  that other medication may be stopped or doses
  adjusted.
• How is medication stopped or altered in a SSEPR
  and who has the authority to do it?
• Will the buck stop with the name on the
  prescription?
• What about financial management and my
  consortiums drug budget?

10
UK-LEEDS SHARED RECORD PROFESSIONAL GUIDANCE
SERVICECompetitive Contract Notice

• Shared electronic care records i.e. electronic
  patient records where more than one group enters
  clinical data (e.g. GP practice and community
  services) are being enabled by the National
  Programme for IT as a means of ensuring that
  medical information is available at the point of
  care to those with a need to know.Good Practice
  Guidelines (GPG) v3.1 (2005) defines the quality
  standards and governance arrangements needed
  before a practice can be authorised to keep its
  patient records electronically these include
  maintaining data quality and correcting errors.
  It does not specifically cover the situation of
  shared clinical records
• This work package will establish professional
  shared records keeping guidelines for the
  management of information and responsibility for
  patient care in a shared record system, assured
  by multi-professional and patient bodies. The
  principles of these deliverables should be
  applicable across all shared record settings.
  The deliverables will be
• An agreed scope for the Shared Record
  Professional Guidance, ensuring that scope is
  correct and reasonable, is consistent with, and
  supplements, other government policy initiatives
  and no critical areas are overlooked
• An interim guidance report
• A final guidance report assured by the
  multi-professional and patient reviewer group (to
  be agreed at the start of the work package, but
  will include the Joint GP IT Subcommittee,
  Nursing/AHP representation and the Information
  Commissioner's Office, member(s) of the Voluntary
  Sector National Advisory Group)

11
Does Lorenzo mean the end of GP electronic
patient records?EHI Primary Care 15 Apr
2008http//www.ehiprimarycare.com/comment_and_ana
lysis/309/does_lorenzo_mean_the_end_of_gp_electron
ic_patient_records_tcqcomments

• A Real-Life Example 15 May 08 1110
• "Your theoretical concerns are interesting but
  your example is quite poor. Your example of a
  chiropodist diagnosing diabetes and it "causing
  problems" is more fiction than fact."
• I work on a linked system which connects 3
  practices with community services and we have
  encountered precisely this problem. A podiatrist
  made a diagnosis of 'diabetes' apparently based
  on the appearances of the patient's feet. All the
  other evidence is against this diagnosis. The
  podiatrist has declined to change her mind,
  arguing that this is her professional
  prerogative. And, despite this being our
  practice's registered patient, there is nothing
  we can do about this, except record in the notes
  our disagreement. For QuOF purposes, the patient
  remains 'diabetic' and we are therefore required
  to maintain full diabetic management (without of
  course any prescribing).
• In response to your specific questions 1) why
  exactly would chiropodists do that? - because
  they, like other human beings, from time to time
  choose to think they are right.
• 2) with the patient's lab results easily
  available ... who would believe the chiropodists
  diagnosis when the glucose readings and A1c
  scores are normal ? - QMAS, SCR and any other
  non-human 'reader' of the notes.
• 3) it would be easy to prevent certain diagnoses
  to be made by certain professions (within their
  scope of practice). - It has not been possible to
  prevent this one and there is (we are told by the
  suppliers) no way of modifying our system in this
  way.
• As you may imagine, this is one of the reasons
  why we intend to withdraw from this linked system
  as soon as practically possible.

12
North of Tyne Local Health CommunityOperating
Framework IMT PlanMay 2007

• Key Assumptions and Dependencies
• Some assumptions have been made in the completion
  of this LHC plan. These include -
• Functionality is fit for purpose The
  functionality offered by Connecting for Health
  (CfH) / Local Service Provider (LSP) systems is
  such that these systems are considered fit for
  purpose.
• Specific Functionality In some cases the
  description of the functionality offered by CfH /
  LSP systems is not in sufficient detail to
  determine whether systems are likely to be fit
  for purpose for replacement of specific
  (specialist) systems. Where a CfH / LSP system
  has been assumed to be fit for purpose but there
  is some uncertainty over this, a comment to this
  effect has been included in the detailed systems
  plan.
• Timescales These fit for purpose systems will
  actually be available within timescales quoted by
  CfH / CSC.
• GPSoC Within the framework of GP Systems of
  Choice (GPSoC) the Phoenix GP system is
  sufficiently attractive to GP Practices for them
  to migrate to the Phoenix system.
• TPP is The Phoenix Partnership the TPP system
  is SystmOne which is a one patient one record
  system and includes modules for general practice,
  community, mental health, prisons, drug services,
  sexual health et al.

13
13 North, Midlands and East Programme for
ITDeployment of interim solutions at 31 March
2008http//www.nao.org.uk/publications/nao_report
s/07-08/0708484ii.pdf

• NOTE
• 1 CSC is also deploying a number of other interim
  systems that will be replaced by Lorenzo or
  SystmOne.

14
End user requirements and usability

• Secondary care uses flat narratives related to
  single episodes or problems
• CHS has statutory reports and needs family
  linkages
• Mental Health has particular information and
  security needs
• General Practice has interactive EPRs and is
  largely paperless
• Is it possible to design a system which meets and
  displays all the information needed for any one
  speciality or organisation?
• Is it conceivable that all non-GP organisations
  will agree to becoming paperless overnight?
• Can one size fit all?

15
Effects on other systemsunintended consequences

• GP records find mistaken diagnoses which they
  cannot correct
• This corrupts the patients record
• QOF and all associated information and financial
  flows potentially unreliable.
• Adverse effects on non-NHS situations e.g. life
  insurance and job prospects.
• Risk to patients of receiving unnecessary or
  being denied necessary treatment
• Validity of data extracted for e.g. QMAS, IMT
  DES and GPES
• Risks to patients from false information
• Risks to patients if prescribing not sorted.
• If bad enough, GPs could lose accreditation for
  paperless practice!

16
Future developmentsSafety issues

• Usability for all users selective views
• Ensuring that the record is complete no paper
  records anywhere
• How the SSEPR if a Detailed Care Record
  covering a local area - will manage-
• Patients who attend services not included in the
  SSEPR-
• Cross-border Trusts
• Using different record systems
• Moving house (and LSP or country)
• Transferring to a GP system not part of the
  SSEPR can the SSEPR work without a monoculture
  IT system?
• Interoperability
• Management of organisational change in a SSEPR
• Assigning responsibility in a diffuse care system

17
SSEPRs

• Questions?
• Im hoping someone in the audience will have some
  answers!

18
GPES

• what will this service do? The General Practice
  Extraction Service (GPES) will be a centrally
  managed primary care data extraction and analysis
  service that will obtain information from NHS GP
  systems in England with the aim of improving
  patient care. A two phase approach is envisaged
  Phase 1 GPES will be used by the NHS
  Information Centre to provide census extracts for
  the Department of Health and Arms Length Bodies
  (including the Health Protection Agency) to
  satisfy a range of needs including disease
  surveillance, clinical audit, support for
  commissioning patient services, improvements in
  managing public health and the allocation of NHS
  resources. GP practices will be able to run
  queries against their own practice system
  database. Phase 2 On completion of Phase 1,
  GPES will be made available to recognised NHS
  bodies including Strategic Health Authorities,
  Primary Care Trusts and Practice Based
  Commissioning groups so that they can obtain
  local data extracts to address specific local
  issues. This will be subject to business case
  justification and determination of the applicable
  information governance and authorisation
  procedures.
• http//www.ic.nhs.uk/work-with-us/developments/gen
  eral-practice-extraction-service-gpes

19
Access Control Frameworkfrom NAO
reporthttp//www.nao.org.uk/publications/nao_repo
rts/07-08/0708484ii.pdf

• n Controls access to NHS Care Records Service
  data, held by the Personal Spine Information
• Service. The Framework registers and
  authenticates all users, and provides a single
  log-on
• and a record of each healthcare professional
  accessing a patients record. All information
• is provided on a need-to-know basis, based on a
  users role and legitimate relationship
• with the patient. It stores details of these
  relationships between healthcare professionals
  and
• patients, and of information to which patients
  have chosen to restrict access.
• n The Framework was implemented in December 2005
  and will be extended through
• the introduction of the Access Control Service
  from May 2008. This will provide the
• following capabilities.
• n Sealed envelopes the ability to restrict
  access to clinical information (individual
• documents) in a patients Summary Care Record.
• n Dissent to the Summary Care Record if a
  patient chooses not to have a Summary
• Care Record at all, one will not be created and
  there will be no record to be viewed.
• n Dissent to sharing a record a patient can
  have a Summary Care Record but choose
• not to share it, and any attempt to view the
  record will be denied.

20
GUIDANCE FOR THE NHS ABOUT ACCESSING PATIENT
INFORMATION IN NEW AND DIFFERENT WAYS AND WHAT
THIS MEANS FOR PATIENT CONFIDENTIALITY Linked
electronic care recordsHow they will affect your
work and patientshttp//www.connectingforhealth.
nhs.uk/systemsandservices/nhscrs/publications/staf
f/nhsguidance.pdf

• b) Detailed records
• Records containing information about a patients
  medical care exist now in a variety of places,
  for example, at their GP surgery or at hospitals
  where they have received treatment.
• Over the next few years, as the NHS CRS develops,
  instead of having separate records in all the
  different places where a patient receives care,
  NHS organisations which normally work together in
  a local area, such as hospitals, clinics and GPs,
  will develop and begin to link and access
  detailed electronic records for each patient.
  These groupings will be determined locally, by
  need and technical capability. A patient who has
  attended NHS organisations in different areas may
  have more than one set of linked detailed
  records.
• NHS Care Records Service 7
• All detailed records will be kept electronically
  to be accessed locally. Detailed electronic
  records will typically contain
• Name, address, date of birth and NHS number.
• Details of any medicines, allergies, results of
  tests and X-rays.
• Details of any health conditions, such as asthma
  or a heart problem.
• Notes about any treatments, diagnosis or
  operations that the patient has had and
• proposed plans or reminders.
• They will sometimes include other information the
  patient has shared (for example, about family or
  work) but only where this is relevant to the
  patients health care.
• Linked detailed electronic records will be
  developed gradually over several years and that
  process has already started in some places.

21
MINUTES OF EVIDENCE TAKEN BEFORE THE COMMITTEE OF
PUBLIC ACCOUNTSMonday 16 June 2008National
programme for IT in the NHS progress since 2006
http//www.publications.parliament.uk/pa/cm200708
/cmselect/cmpubacc/uc737-i/uc73702.htm

• Q63 Geraldine Smith From the demonstration last
  week, it did look very good. I hope it works as
  well as it appeared to in that demonstration. Can
  I ask, is it just going to be the hospitals that
  hold this information or is there that link with
  the GPs, or is it going to be gradual?
• Mr Hextall It will be gradual. There are four
  releases currently planned of the Lorenzo
  software and that is one thing that was a change,
  one of the lessons from the review that Mr Bacon
  enquired about that we commissioned last year.
  The four releases have increasing levels of
  functionality and the GP integration is in the
  fourth release, so it is right at the end.
• Q64 Geraldine Smith What sort of time delay is
  that? How long are you talking about?
• Mr Hextall I think it is 2010. I would need to
  check.
• Mr Nicholson Spring 2010.
• Q65 Geraldine Smith One of the things again from
  the demonstration that I found very useful was
  that there appeared to be an alert system as
  well, so there was a lot of information available
  for GPs who may be prescribing a drug that may
  interfere with someone's condition that they may
  not be immediately aware of.
• Mr Hextall They certainly have elements of
  prompts and decision support built into the
  system to try and prevent people doing the wrong
  thing, yes.

22
MINUTES OF EVIDENCE TAKEN BEFORE THE COMMITTEE OF
PUBLIC ACCOUNTSMonday 16 June 2008National
programme for IT in the NHS progress since 2006
http//www.publications.parliament.uk/pa/cm200708
/cmselect/cmpubacc/uc737-i/uc73702.htm

• Q93 Dr Pugh Can I just turn to Fujitsu for
  a second? One thing that is proven about Choose
  and Book is that GPs are allowed to choose their
  own systems, and that has been much appreciated
  by GPs. It did say, page 39, in paragraph 3.42 of
  our previous NAO Report that this had not been
  anticipated in the Fujitsu contract. I am right
  in thinking that, am I not? There is this kind of
  flexibility?
• Mr Hutchinson There was no demand for GP in the
  Fujitsu contract so it was always expected we
  would add that on later, and that was part of the
  re-set discussion.
• Q94 Dr Pugh The extra cost was estimated at
  105.9 million?
• Mr Hutchinson Yes.
• Q95 Dr Pugh But that was not the deal breaker?
• Mr Hutchinson No.
• Q96 Dr Pugh So there was agreement reached on
  doing that?
• Mr Hutchinson That would not have been an issue,
  no.

23
MINUTES OF EVIDENCE TAKEN BEFORE THE COMMITTEE OF
PUBLIC ACCOUNTSMonday 16 June 2008National
programme for IT in the NHS progress since 2006
http//www.publications.parliament.uk/pa/cm200708
/cmselect/cmpubacc/uc737-i/uc73702.htm

• If I am in a hospital in the north and I have
  this very rich record listing all my ailments,
  prescriptions and so on, but I move south and
  I want a similar record but it would be sitting
  in a different patient administration system, is
  it a relatively straightforward process to import
  all this data, all these ones and noughts, from
  one system to another, and have you ensured that
  is the case?
• Mr Hextall It is not at the moment while both
  Cerner and Lorenzo are in development. Once both
  are forward deployed we would hope to be able to
  achieve transfer of patient records, in the same
  way we already do with GP records.
• Q100 Dr Pugh And you are insisting on it?
• Mr Hextall We are insisting on interoperability
  between the systems so that patient information
  can be available where ever it is needed.
• Q101 Dr Pugh That is a reassurance as well. In
  a sense, if you do get that kind of
  interoperability, there is not an enormous amount
  of merit in having everybody in the one area use
  the same system, is there?
• Mr Hextall There are different justifications,
  I suppose, in that case because one of the values
  of using a common system that is of good quality
  is that it is going to be resilient and have
  disaster recovery built in, so that hospitals
  that are open 24 hours a day seven days a week
  can be assured of 99.9 availability, 45 minutes
  in a 31 day period, so high standards of
  resilience, but also, every time you come to
  upgrade it, the fewer systems there are to
  upgrade the cheaper it is, and the less risky it
  is.
• Q102 Dr Pugh So the fewer people providing the
  care the fewer options you have got.
• Mr Hextall Yes.

24
Summary Care Record Evaluationhttp//www.ucl.ac.u
k/openlearning/documents/scrie2008.pdf

• There are many people who wish to develop an
  informed opinion on the Summary Care
• Record patients who wonder whether to opt in,
  opt out, or take some middle ground
• option citizens who question how their taxes are
  being spent GPs who struggle to redefine
• what confidentiality means in the information
  age investors who wonder whether this latest NHS
  IT project is a risk too far and the responsible
  press, who wish to cover an important story
  beyond the obvious soundbite headlines.
• All of them must first engage in a debate about
  how the critical tensions set out above (which
  will never go away, because they are inherent to
  the complexity of the problem) play out in
  different situations and settings. The debate
  must address what large-scale networked
  electronic records mean for each of us personally
  and for the National Health Service generally.
  This report does not seek to prejudge the outcome
  of that debate, but to illuminate the issues in a
  way that informs it.
• Professor Trisha Greenhalgh OBE
• April 2008
• SUMMARY CARE RECORD
• EARLY ADOPTER PROGRAMME
• An independent evaluation by University
• College London

25
Summary Care Record Evaluation

• 2.2.4. The current consent model for the SCR is
  one of implied consent or opt-out (i.e.unless a
  person explicitly withdraws consent, their record
  will be created). Patients
• may choose one of three main options
• dont store (a blank SCR will be
  creatednothing will be placed on the record
  beyond the demographic details that are already
  on the Spine)
• store and share (a full SCR will be created) or
  
• store but dont share (a full SCR will be
  created but explicit consent must be obtained
  from the patient every time a health professional
  wishes to access it).