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Name * / Dr. Neelam Dugar & Members of RCRIIG
Organisation / RCR Imaging Informatics Group (RCRIIG)
Organisation type+: e.g. Public, patient, PCT etc / Patient / Service User / CarerPublicHealthcare providerSocial Care providerCharity or Voluntary organisationAdvocacy or Support organisationSHAPCTLocal AuthorityHealth professionalSocial Care professionalClinicianCommissionerManagement and StaffRegulatory bodyAcademic / Professional InstitutionEmployer representativeEmployee representativeTrade UnionSupplier Information providerInformation professionalInformatics professionalOther - please specify
Other (if applicable):Multidisciplinary Grassroots Group-(Doctors, Allied Medical Professionals, Informatics Community, lay public, & suppliers)
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CHAPTER 1: An Information Revolution
  1. What currently works well in terms of information for health and adult social care and what needs to change?
/ PACS (Picture Archiving & Communications Systems) works well in secondary care due to adoption of DICOM as the global interoperability standard.
However, PACS/RIS is limited largely to radiology is creating a radiology data silo. Images held in PACS and radiology reports in RIS needs to be part of a the patient centric clinical record. Adoption of XDS (Cross Enterprise Document Sharing) of IHE(Integrating the Healthcare Enterprise) as the emerging global interoperability standard for EHR (Electronic Health Record) will achieve this.
The ability for clinical information to follow the patients journey across NHS organizations (primary, secondary & tertiary care)-- will be compliance of use of the NHS number. NHS number MUST always available to all front end clinical systems to use. Temporary NHS numbers must be available-- if patient does not have an NHS number.
  1. What do you think are the most important uses of information, and who are the most important users of it?
/ USES: 1. A comprehensive patient centric clinical information must be available at the point of clinical care to enhance clinical decision making & improve patient safety.
2. Reseach & Clinical Trials is key to improving Clinical care within a population---Anonymised data, retaining meaningful demographic information, on clinical conditions which can be used for research and training of clinicians, to improve patient care and patient outcomes.
IHE (Integrating the Healthcare Enterprise)Global Standards to support this--Teaching Files & Clincal Trials Export Profile of IHE will enable any IT systems to send anonymised information for research & trials. This creates a competitive enviornment of IT systems for NHS to choose from without compromising the end goal of research & training.
USERS: The NHS frontline staff & NHS Research & Innovation
  1. Does the description of the information revolution capture all the important elements of the information system?
/ The Information revolution must also focus on the micro level; it must deliver comprehensive PATIENT CENTRIC clinical information to Clinicians working on the front line at the point of patient care & decision making anywhere in the NHS.
  1. Given the current financial climate, how can the ambitions set out in this consultation - to make better use of information and technology to help drive better care and better outcomes - be delivered in the most effective and efficient way?
/ 1. Create a strategy for multivendor competitive environment for Healthcare IT, to support innovation in NHS IT
2. Simplify NHS IT procurement processes to allow a fair play for small & medium sized suppliers to innovate & concentrate on software development (without having to a have a large back office to deal with NHS procurement bureaucracy).
3. Adopt global interoperability standards (as most IT suppliers supply to a global market & this will also allow innovation done for NHS IT to be traded easily with other countries--make UK an Healthcare IT exporter (rather than a net importer)
4. The core emerging global standard for EHR is XDS/XDS-I standards of IHE (Integrating the Healthcare Enterprise). Adoption of standards based interoperability as a strategy will save millions to the UK taxpayer.
  1. Where should the centre be focusing its limited financial resources and role to achieve the greatest positive effect?
/ Use existing global interoperability standards of XDS-XDS-I of IHE & ensure that suppliers are able to prove their interoperability in existing connectathons (without any impact on taxpayers money to reinvent the wheel in creating a interoperability connectathons just for NHS). Innovation based on competition & standards will drive down prices of Healthcare IT & potentially save millions for a tax funded health service.
Let existing independent global standards bodies like DICOM, HL7 & IHE continue to set standards & let NHS/DOH participate with open questions, contributions and requests for change/enhancement--rather than create a separate quango.
CHAPTER 2: Information for patients, service users, carers and the public
  1. As a patient or service user, would you be interested in having easy access to and control over your care records? What benefits do you think this would bring?
/ PATIENT PORTAL: Patients having access to their information is important to promote self-help and self care which could save cost to a public funded service. However, most patients find it frustrating when their doctors in primary care or secondary care do not have information regarding them at the point of contact, as this informating is stuck in paper notes or in some electronic data silo in different organisations within the same National Health Service. This is where global interoperability standards are key. This has become even more of a problem with centralisation of services with cancer, stroke, etc where it is no longer possible for a single NHS organization to provide a full gamut of services & patient information lies scattered. Adoption of XDS of IHE will not only allow for GPs, & tertiary care doctors to have a full patient centric clinical record of the patient but the same global standard will also allow patients to have access to their own records (PATIENT PORTAL). Access to information is key to patient being able to help themselves.
The benefit will be that patients will be better equipped to act as an informed adult taking responsibility for their actions and the care decisions rather than being "done to". Maybe reduce litigation.
  1. As a patient or service user, in what ways would it be useful for you to be able to communicate with your GP and other health and care professionals on-line, or would you prefer face-to-face contact?
/ Initial appointment should be offered as a face to face communication.
However, follow-up appointments must be a patient CHOICE--
a. e-mail type electronic communication
b. Video-conferencing
c. Face to face---face to face consultations must be offered as a choice always.
Despite advances in technology it is still well recognised that face to face communication is the most rich form of communication between human beings, and should always be offered to patients as a matter of principle.
The ability to make GP appointments on line would be useful.
  1. Please indicate any particular issues, including any risks and safeguards, which may need to be taken into account in sharing records in the ways identified in this consultation document.
/ Patients in NHS expect their records to be available to professionals involved in their clinical decision making at point of patient care. However, with electronic records there is always a fine line between sharing records for patient care vs. records being surfed for curiosity.
The only practical way to improve patient confidentiality
1. ACCESS LOG displayed on all IT systems (all staff who have accessed patient information are logged and this information is displayed on the system & visible to system users).
2. Access log to their clinical information is disclosed to patients if they should request it, if they should feel the confidentiality has been breached.
3. ATNA Standard of IHE deals patient data access--even when clinical information maybe transferred to other systems/applications access continues to be logged.
AnyClinical system should be display a list of users who accessed an individuals record.
  1. What kinds of information and help would ensure that patients and service users are adequately supported when stressed and anxious?
/ All Clinical letters, discharge summaries, radiology reports, radiology images, lab results, prescription etc etc are clinical documents. These documents & images maybe created in multiple best of breed IT systems in primary & secondary care,-- but is is important that a frontline doctors who are involved in prescribing treatment or making decisions on patient management, have access to comprehensive clinical information at the point patient care. When stressed & anxious, patients should be able to visit their GPs (with the confidence that GPs will have access to all the hospital information relevant to their care).
XDS provides a global interoperability standard to deliver this type of patient centric EPR view acr.
Today, patient's care maybe shared between the GP, local DGH, & a cancer centre. This fragmentation of record (as records are stuck in Clinical IT data silos & paper records are not easily accessible from different organizations)-- often causes anxiety to patients & care providers. Seamless access to patient centric information across organizational boundaries can be delivered by adoption of interoperability standards of XDS & XCA of IHE.
  1. As a patient or service user, what types of information do you consider important to help you make informed choices? Is it easy to find? Where do you look?
/ Today clinical letters, discharge summaries, lab results, radiology reports are CREATED in multiple clinical IT systems, but due to a lack of robust inter-operabilty standards they are stored in electronic data silos. Due to electronic data silos, they are printed & stuck in paper patient notes as paper records are the only means of having a comprehensive record for a patient. Adoption of XDS will bring the electronic records together in a comprehensive manner thus moving from PPR (Paper Patient Record) to EPR (electronic patient record) without having to replace all the functionally rich IT systems that already exist in the NHS.
  1. What additional information would be helpful for specific groups – eg
- users of maternity and children’s health services;
- disabled people;
- people using mental health or learning disabilities services;
- the elderly;
- others? / Access to information will help both patients & those who provide care to patients:
Improve understanding conditions so that patients can try to help themselves
Other clinical care providers can have comprehensive patient information to support care.
  1. What specific information needs do carers have, and how do they differ from the information needs of those they are caring for?
/ Information about conditions & how to care for these. Ability to be involved in forums/groups which discuss issues.
  1. What are the information needs of people seeking to self-care or live successfully with long-term physical and mental health conditions and what support do they need to use that information?
/ Unbiased information about their conditions & how they can help themselves. Ability to be involved in forums/groups which discuss issues. Ability to get specific, personal, re-assurance or advice in between face to face meetings if the are concerned about something.
CHAPTER 3: Information for improved outcomes
  1. What information about the outcomes from care services do you (as patient, carer, service user or care professional) already use?
/ NICE Guidelines & Royal College Standards for appropriate use of investigations
  1. What additional information about outcomes would be helpful for you?
/ Unbiased information based on evidence
  1. How can the benefits of seamless and joined up information be realised across the many different organisations (NHS and non-NHS) a service user may encounter?
/ Adoption of XDS/XDS-I with XCA standards of IHE will achieve a seamless & joined up patient centric information across different organizations (NHS & non-NHS). XDS & XCA also allow access information across organisational boundaries WITHOUT sacrificing local governance arrangements, and system choice.
  1. For which particular groups of service users or care organisations is the use of information across organisational boundaries particularly important?
/ With centralization of services--Cancer, Stroke, Trauma etc in the NHS, a patient often has a shared care between multiple organizations. Seamless access to patient centric information that crosses organization boundaries is important for PATIENTS to get a safe & timely care & alsofor all those CARE PROVIDERS who are involved in clinical decision making. Information sharing is critical to effective working of Cancer Multiidisciplinary Meetings--which cross organizational boundaries even today.
  1. What are your views on the approach being taken, and the criteria to be used to review central data collections?
/ Central Data Collections for example for treatment of cancer etc is important. However, patient confidentiality must be at the heart of this.
Data required by commisioning bodies needs to "flow" automatically from active "clinical" systems used to provide care (not input by a data clerk). This requires a careful understanding of what data is required centrally & adopting HL7 messaging standards to enable data feeds from active clinical systems.
  1. How could feedback from you be used to improve services?
/ NHS as an organization needs to be supportive of & responsiveto negative feedback (i.e. constructive criticism). This change of culture is key to improving services.
It is important to understand that front line staff do care about the wider situation, and want to see a modern, effective, connected NHS.
  1. What would be the best ways to encourage more widespread feedback from patients, service users, their families and carers?
/ Both electronic & paper feedback encouraged - at the point of care, and abililty to input from home.
  1. What are the key changes in behaviour, systems and incentives required to make the NHS and adult social care services genuinely responsive to feedback and how can these be achieved?
/ To have a central logging showing number offeedbacks were received (both negative & postive).
ATTITUDES: Even negative feedbacks will show that the organization is responsive to feedback which is why an individual bothers to fill out a negative feedback form.
  1. Which questions, if asked consistently, would provide useful information to help you compare and choose services?
/ Single Patient Satisfaction Survey question--How would you rate the service provided to you today?
  1. What will help ensure that information systems - and the data they collect - are appropriate to support good commissioning at different levels, including decisions by individual patients, GP practices, GP consortia, service providers, local authorities and the NHS Commissioning Board?
/ Using XDS based EPR with an XDS Registry metatdata information-- referral patterns between Primary & secondary care & inetrdepartmental referrals could easily be achieved with using existing departmental systems, without a massive rip & replace of existing IT systems. Analysis of this metadata information is key to commisioning of services.
Better access to information will also reduce unnessary referrals & reduce overall cost to the taxpayer.
Robust adoption of NHS number as the main unique patient identifier is key to this concept of information sharing across organizational boundaries.
CHAPTER 4: Information for professionals
  1. How can health and care organisations develop an information culture and capabilities so that staff at all levels and of all disciplines recognise their personal responsibility for data?
/ Patients in NHS expect their records to be available to professionals involved in their clinical decision making at point of patient care. However, with electronic records there is always a fine line between sharing records for patient care vs. records being surfed for curiosity. The only way to prevent the latter happening
1. Audit trail of access displayed on all IT systems (all staff who have accessed patient information are logged and this information is displayed on the system & visible to system users).
2. Access log to their clinical information is provided to patients if they should request it, if they should feel the confidentiality has been breached.
3. Educating staff that they maybe questioned about their data access as access is logged at all times.
4. Promote a culture of regular audit of access to data. Systems must provide this data a simple readable format.
5. ATNA Standard of IHE deals patient data access logging--even when clinical information maybe transferred to other systems/applications. Any Clinical system should be display a list of users who accessed an individuals record
  1. As a clinician or care professional, how easy is it for you to find the evidence you need to offer the best possible care and advice? What could be done better?
/ Currently it is usually very cumbersome to access patient centric data as patient data lies in electronic data silos. Clinical Paper notes come closest to providing a "comprehensive" patient record. However, with paper records there are always issues about vital information not being being available when needed (at the point of clinical decision making).
Paper notes do not include radiology images which a very important part of a clinical record--as it lies in the PACS data silo.
Adopting a global interoperability standards like XDS/XDS-I will allieviate the data silo structure (propagated due to commercial interests) & actually build a patient centric clinical record (EPR) using the existing systems (in the interests of patients).
  1. Clinicians, practitioners, care professionals, managers and other service provider staff will be expected to record more data and evidence electronically. How can this be facilitated and encouraged? What will be the benefits for staff and what would encourage staff to reap these benefits?
/ Clinicians are already recording a huge amount of data which is often produced in existing systems & in paper.
The failure has been the lack of interoperability standards to bring them together in a meaningful way.
Adoption of global interoperabilty standards is key to getting out the information needed and presenting them in a meaningful way to support patient care (without addition burden to clinicians or costs to the taxpayers). Aim should be to bring existing data together in a patient centric way--rather than getting doctors, nurses, and other health care professionals to fill more forms that take time away from caring for patients.