Tag Archives: Patient data

National Information Board – Patient Carers and Service User Vision

Policy Briefing aimed at healthcare professionals is available for LKS staff to share in their own organisations. This has been produced and shared by the JET Library, Mid Cheshire Hospitals NHS Foundation Trust. Please feel free to reproduce it (with acknowledgement to JET Library) for your own purposes.

Impact on library policy/practice: 

These plans do not directly apply to libraries, but some of the vision has implications for information libraries may wish to make available through their activities for providing information to patients or the public; or to NHS /social care staff that need to know of or share this information with the public and patients.

As these plans are intended for local development and implementation – which aspects of the plans are developed will vary from one place to another.

If locally the plans are taken forward to highlight access to good quality information online via NHS Choices, or for the NHS to help patients understand what mobile apps and wearable devices for tracking/monitoring their health can be safely trusted – libraries may wish to include this information their provision/signposting of information to the public and patients.

If organisations focus on the implementation of more telehealth or telemedicine solutions for providing service to patients or for the sharing of patient data, test results and information between organisations e.g. hospital and GP, there may be an interest in resources around these topics from staff to raise their awareness of these technologies and see what good/existing practice is already in place.

Source: National Information Board

Link to main document: https://www.gov.uk/government/publications/personalised-health-and-care-2020-service-user-vision

Supporting documentation: The Clinical version: Information and Digital Technologies Clinical Requirements 2020 http://www.aomrc.org.uk/publications/reports-guidance/information-digital-technologies-clinical-requirements-2020/

 Publication format: PDF

 Date of publication: October 2017

Summary of driver: Patient Carers and Service User Vision: Personalised Health and Care 2020.

This vision document states what the Government’s and national health and care organisations’ current digital technology programmes will enable health and social care services to deliver for people in England; through improved use of information technology.

These plans are to be implemented locally, with local decision making, so how they are achieved may different from one area to another. The plans may mean doing things differently, doing new things or just doing existing things better.

Key features of driver:

  • It will be easier to find reliable online information and advice to maintain fitness and wellbeing
  • Online support through NHS 111 will help people if they have a health problem
  • NHS 111 will signpost people to the right help
  • It will be easier to find information at nhs.uk
  • The NHS will help people understand which apps they can trust
  • People will be able to link information from wearable and devices to their own health records
  • There will be free wi-fi in all NHS premises
  • People will be able to book and change appointments online
  • People will be able to track their test results online
  • People will be able to talk to their doctors via phone or Skype
  • GPs will be able to use remote consultation more quickly and easily
  • GP and hospital systems will link up more effectively
  • Children’s red books will become electronic
  • People will have a choice about where, when and how medicines are delivered
  • The accuracy of prescriptions will be improved
  • Test results will be available more quickly and easily
  • It will be easier for different health-care teams to work together
  • It will be easier to find out what social care support people are eligible for and how to access it
  • Carers will find it easier to get hold of the information and support they need
  • Data from gene testing will be linked to other information and analysed in new research hubs
  • Health and care services will have more reliable, joined-up and secure systems

 Primary audience: Public, NHS and social care organisations.

 Date last updated: November 2017

 Due for review: November 2018

 Group member responsible: FG


Personalised Health and Care 2020: Using Data and Technology to Transform Outcomes for Patients and Citizens: A Framework for Action

Source: NHS National Information Board

Link to main document

Publication format: PDF

Date of publication: November 2014

Summary of driver: 

Better use of data and technology has the power to improve health, transform the quality and reduce the cost of health and care services.

It can:

  • give patients and citizens more control over their health and wellbeing
  • empower carers
  • reduce the administrative burden for care professionals
  • support the development of new medicines and treatments

This document is a framework for action that will support frontline staff, patients and citizens to take better advantage of the digital opportunity, and the newly created National Information Board (representing a number of national bodies) will report annually on progress made against the priorities. The ambition is to make the NHS a digital pioneer.

All NHS funded care services are expected to have digital and interoperable systems that remove the limitations of paper records by 2020.

Technology will play a vital role in helping contribute to the £22 billion in efficiency savings needed to sustain the NHS, as set out in the NHS Five Year Forward View.

Key features of driver: 

Some of the specific priorities are:

  • Online access to personal GP records by 2015
  • Online access to all personal health and social care records by 2018, including the ability for patients to add their own comments.
  • National digital standard for people at the end of life – building on the success of Co-ordinate My Care in London – so their care preferences are respected.
  • Digitisation of the Personal Child Health Record (the red book) to offer new mothers personalised mobile care records for their child
  • NHS ‘kitemarks’ for trusted smartphone apps which will help patients access services and take more control of their health and wellbeing
  • Patients will only have to tell their story once – with consent, care records will be available electronically across the health system by 2018 for urgent care services and 2020 for all services – improving coordination of care, particularly for those with complex conditions
  • ensuring the NHS remains a leader in fight against disease and as a hub for genomics research
  • developing innovative personalised medicines so treatment is right first time

Primary audience: All NHS organisations

Impact on library policy/practice: 

The report does not mention library and knowledge services, and is mainly concerned with data about patients.

However, there are a few areas that may impact on us:

  • Healthcare workers will be expected to use mobile devices much more in future, and library staff may be able to provide some support and training on using these.
  • In 2015 NHS England will develop proposals for Code 4 Health, a programme to support health and care professionals to develop apps and other digital services. Library staff could get involved to write their own apps, or support health and care staff to do so.
  • Health Education England and the Health and Social Care Information Centre are introducing a new knowledge and skills framework in 2016 that will embrace digital technology. Library services may be able to demonstrate how our services, particularly training, can contribute to staff meeting the requirements.
  • There are proposals to create a federation of health informatics professionals. Some librarians are already members of UKCHIP, which will become part of this, and CILIP are also represented. This could be an opportunity to demonstrate the role that library and knowledge have in health informatics.
  • Digital services are to be delivered in line with the Government Service Design Manual, and this may impact on future library website or e-resource developments, or indeed on the way library services operate as ‘digital by default’ becomes more widespread.

Date last updated: Dec 2014

Due for review: Dec 2015

Group member responsible: JC


Knowledge strategy: Harnessing the power of information to improve the public’s health

Title of driver: Knowledge Strategy: Harnessing the power of information to improve the public’s health

Source: Public Health England

Link to main document: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/248820/PHE_Knowledge_strategy_October_2013.pdf

Publication format: PDF. Other formats available on request; email james.freed@phe.gov.uk

Date of publication: October 2013

Summary of driver:

The document is a response from whole public health system under PHE, to the Department of Health information strategy, The Power of Information: Putting all of us in control of the health and care information we need.
The PHE strategy outlines the strategic approach that the public health system will take around information and knowledge, in order to improve and protect public health and reduce inequalities. It is an illustration of how PHE will meet the knowledge and information requirements of public health practitioners across the public health system via a framework to support change across the public health system resulting in PHE becoming ‘an information-led knowledge-driven organisation’.

Key features of driver: Eight priorities for public health knowledge were identified by PHE which in turn led to the creation of 12 commitments which will be used to support business planning cycles over the next five years. Those eight priorities are:
Understand and meet the needs of users, particularly local government and local NHS
Assess priorities for the support, conduct and translation of public health research
Work with others to build and manage linked datasets that are safe and available for use
Bridge the current gap in translation of knowledge into action
Build and develop health intelligence networks
Extend the use of surveillance to inform health responses
Connect people to share experience
Develop a web portal to report and provide access and evidence
Each of the eight priorities has an example of the priority in practice and the metrics used to evaluate it.
This document is to be used by PHE as a tool to inform of immediate needs and to close the gaps where the way forward is less clear.

The 12 commitments
Support openness and innovation
Provide the tools to let public health professionals do their jobs
Understand and meet public health requirements for knowledge
Develop a strategy for research
Make data more useful and more accessible
Work with others efficiently
Work with knowledge and data safely and securely
Ensure everything we do has a positive impact and provides value for money
Develop cross-system networks to share intelligence and expertise
PHE to deliver the national health surveillance strategy for England
Share and learn from experience
Development of a digital strategy

Primary audience: Public health workers/local authorities/other stakeholders

Impact on library policy/practice: With the push towards evidence based practice this highlights the possibility of targeting the public health workforce with detailed current awareness bulletins if not doing so already. Some public health organisations might not have specialised library information professionals available to them-so there is an opportunity here for other NHS LKS staff to close the gap. There is the possibility of collating more general public health current awareness information for other health organisations-to alert them to changes/drivers in public health. Priority 4- Bridge the current gap in the transition of knowledge into action- is more or less what we do every day as PHE move to develop a
‘minimum standard’ of knowledge services and the skills required to deliver them.
The knowledge services required include evidence synthesis, mediated literature searching and filtering, information skills training and training in knowledge management tools. Involvement in journals clubs is listed in priority 7 (connecting people to share experience).

Date last updated: June 2014 (Consultation responses published)

Due for review:

Group member responsible: LK

Department of Health Information Strategy

Title of driver: An information revolution: consultation on proposals

Source: Department of Health

Link to main document

Publication format: Consultation (closes 14th Jan 2011)

Date of publication: October 2010

Summary of driver: A consultative information strategy for NHS England which examines the information needed for patients the public; for professionals, for improved outcomes and for autonomy, accountability and democratic legitimacy. Responses to consultation required by 14 January 2011.

Primary audience: All NHS organisations in England

Impact on library policy/practice: Key references are beloiw. Important that all library services contribute to their Trust’s response to the Consultation. Take particular note of chapter 4 on the information needs of professionals.

High quality health and care services depend on good information. The right person having the right information at the right time can make all the difference to the experience of a patient, service user or carer. Good information also enables care professionals to make the process of care safer and more efficient. Information is a health and care service in its own right: it must be freely available to all who need it.
Good information is also the basis for genuine shared decision-making: ‘no decision about me, without me’. We all know the difference between being informed by a service and being left in the dark, and we all know which we prefer. We also all know the experience of receiving volumes of inconsistent or poorly organised information, which can confuse as much as inform.
Information needs to be accessible to all, relevant and well-structured. At present, many people who use our health and care services do not get the information they need and are entitled to expect as part of the care process. Also, we sometimes fail to meet the information needs of our clinicians and care professionals. There are, however, a number of health and care services today where patients, service users and carers are being well-informed and supported to make decisions effectively – we want to build on these successes and on the good practice that already exists.
We need an information revolution to ensure that what is currently seen as good practice becomes the norm. We must not lose sight of the primary purpose of information in the health and care system: to ensure that every patient and service user receives high quality care. ”

“KNOWLEDGE” mentioned in the following sections:

supports clinicians and other care professionals to give the highest quality care, compare their performance with others, identify gaps in provision and develop their knowledge;

supports researchers to advance medical and scientific knowledge

The outer circle (above) shows how data from the patient or service user’s care record, leads to high quality information that gives people real knowledge and choice. The inner circle shows how giving patients or service users control of the data held within their record benefits them, as well as those providing their care. This is discussed in more detail in chapter two.

researchers (confidentially or in anonymous form), to play a part in building up the knowledge that leads to better health outcomes for themselves and for others in society.

The care of the future will, increasingly, be structured around a conversation between the patient or service user and the professional, either through face-to-face contact or remotely, such as through the care record. This will be a genuine dialogue in which each brings an important perspective to bear: the care professional brings knowledge about conditions and treatment options; the patient or service user brings individual needs, protected rights, values, preferences and personal circumstances. The principles, values and rights that underpin this approach are set out in the NHS Constitution

People are more likely to engage appropriately with care professionals and receive the care they want and need. Good support, training and education – backed by relevant, accessible information and support – are the basis for improvements of this kind. The QIPP22 long-term conditions programme is already working with local health communities to ensure patients have access to information and knowledge to help them manage their conditions and avoid inappropriate hospital admissions

Research is vital in providing the new knowledge needed to improve health and care outcomes and reduce inequalities. When resources are under pressure, research can identify new ways of preventing, diagnosing, treating and managing disease. Research is essential to increasing quality and productivity of the NHS and social care services and supports growth in the economy. Outcomes will improve most rapidly when clinicians and care professionals are engaged so that creativity, research participation and professionalism are allowed to flourish

Electronic care records and the wealth of structured data within them are potentially rich resources for applied research – for example, by making aggregated, anonymised data available to universities and other authorised researchers. There is also great potential to build new knowledge that will improve health outcomes and to identify new areas for research. The Government is considering how to provide a high quality research data service that will harness this potential.

“EVIDENCE” mentioned in the following sections:

the need for high quality evidence – from clinical audit, staff feedback, research and other sources- to make shared decision-making a reality

Further detail on our information, evaluation and evidence strategy for public health will be set out in the Public Health White Paper due later in 2010.

A Quality Account is an annual report to the public from providers of NHS healthcare about the quality and outcomes of their services. It allows managers, clinicians and staff to demonstrate their commitment to continuous, evidence-based quality improvement. The first Quality Accounts have been published, covering providers of acute NHS services. Following the evaluation of the current pilots, we will consider extending them to other sectors. We are exploring how this approach could be applied to providers of care and support services.

The use of evidence
4.6 In order to grasp the opportunities offered by the information revolution, clinicians and care professionals need to be able to access the best evidence (including international evidence) of outcomes, interventions and risks. Evidence needs to be user-friendly, up-to-date and available at the point of care, to inform discussions with patients and service users. Evidence is increasingly available in many forms, such as decision support, diagnostic interpretation, alerts such as those relating to drug doses and interactions and evaluation of therapeutic options. Individual professionals, teams and organisations need to be supported to access information of this kind, which can make all the difference in ensuring safety and effective outcomes.

4.7 Clinical and other staff need to use data to help improve the services they deliver and address inequalities, particularly in the outcomes of care. As the information strategy develops, it will need to take account of existing good practice in developing and using quality indicators as the bedrock of robust quality measurement. Such indicators should address key aspects of patient pathways including, where appropriate, looking at how efficiently services are being delivered. It will also be important to build on the Indicators for Quality Improvement library and other resources held by the Health and Social Care Information Centre (the Information Centre), by regional Quality Observatories, by other commercial data providers and by the Social Care Institute for Excellence (SCIE).

NHS Evidence is an on-line portal provided by the National Institute of Health and Clinical Excellence (NICE) that empowers staff with national and international best evidence and best practice information. The evidence is quality assured and made available both in its original form and through guidelines, pathways, tools and other resources. As NHS Evidence is expanded and developed all NHS staff, and others, will have free access to authoritative clinical and non-clinical evidence and best practice – available to support discussions and decisions at the point of care – as well as informing strategic planning and commissioning. It is an important addition to commercially provided data services (which are often subscription-based and aimed at particular specialist audiences). We intend to continue expanding and improving this service.

Q25: 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?
Q26: 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?

We see the evidence of the transformative power of digital technology all around us. To take just one example, the extraordinary growth of social networking websites in recent years is altering how people interact and sustain relationships, and in ways that were not foreseen, even by the pioneers of the sector. While health and care services have made great strides in adapting new technology to improve outcomes for service users, there is widespread consensus that there is scope to go much further

Case studies / Local service profile examples mapping to this driver:
None as of 30/11/10

Date last updated:

Due for review: March 2011

Group member responsible: TO