Tag Archives: Information for patients

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


Expert Patients

Title of driver: Expert patients

Source: Reform

Link to main document: http://www.reform.uk/wp-content/uploads/2015/02/Expert-patients.pdf

Publication format: PDF

Date of publication: February 2015

Summary of driver: This report recommends stronger patient engagement in the NHS as it is key for the health service to achieve savings of £22 billion by 2020-21.

Patient engagement can improve outcomes and use of resources through patients being better able to manage their conditions, and so reducing medical interventions and invasive procedures, as well as improved public health.

Key features of driver:

  • Patient engagement could achieve £2 billion savings by 2020-21 (10% of NHS England target savings).
  • These savings would come from better self-care, improved public health, and greater patient contribution to their care.
  • For the NHS to become fit for “full engagement” private providers and outside expertise will be needed.
  • Outside the NHS, apps and social networking sites are already used by the public to take control over their health and conditions, helping the expert patient to emerge more quickly outside the NHS than within it. The NHS has made limited progress in the use of social media and technologies to improve the patient experience.
  • NHS providers and commissioners should appoint a “Director of Patient Experience” at board level.
  • The NHS should measure levels of patient engagement, activation and involvement and embrace patient engagement regardless of where it originates (whether outside the NHS or within).

Primary audience: Policy-makers, managers and leaders, commissioners, and NHS providers.

Impact on library policy/practice:

Libraries are in an ideal position to provide educational materials to enable patients to learn about their health and their conditions. Public libraries hold Books on Prescription and other resources while health libraries can support staff to educate patients.

Health libraries are also increasingly asked to provide resources or information for patients.

Libraries can adapt to the use of new technologies for customer service and can share expertise with the wider NHS.

Date last updated: February 2015

Due for review: February 2016

Group member responsible: (HS)

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


HCLU Consumer Health Information Website (Health Care Libraries Unit NW)

Title of project: HCLU Consumer Health Information Website

Project Team:

  • Health2Works (web designers)
  • Director of Health Libraries NW
  • CPD & Partnerships Manager


  • General Public
  • Health Providers
  • NHS North West CHI Providers

Resources Required: The project will be managed by the HCLU CPD and Partnerships Manager, Gil Young; under the direction of the Director of the Unit, David Stewart. A sum has been allocated by HCLU to develop the website. All other work will be undertaken by the unit and, at this stage of the project, will not require additional funding.

Timeframe: February 2011 – September 2011

Description of product/service: To create a single point of contact for high quality web based health information for the general public with the emphasis on services located in the North West.

Alignment to local, regional and national drivers: 

Liberating the NHS: Developing the healthcare workforce (white paper) Public Health white paper Nov 2010 Department of Health Information Strategy HCLU strategy

Intended outcome for customer / organisation / library: The main outputs of this project will be: A newly developed website providing access to quality consumer health information for the North West public particularly patients and carers. Marketing materials to aid the advocacy of the services Stronger links between the NHS Libraries and the providers of consumer health information in the North West. A raised profile for HCLU

Next steps: The project will share outcomes and learning with stakeholders and the NHS Library community via the HCLU Web Site, the LIHNN newsletter, briefing meetings and the use of e-mail lists. Contacts across the North West will be encouraged to share information with colleagues in order to raise awareness of the project. The project manager will actively seek out opportunities to share project outcomes, for example sharing knowledge with other libraries and health providers, publications and conferences.

At the end of the project period (September 2011), the website will be handed over to HCLU. A brief end of project report will be compiled, together with recommendations on how the project can be developed further.

The power of information

Title of driver: The power of information: putting all of us in control of the health and care information we need

Source: Department of Health

Link to main document

Publication format: PDF

Date of publication: May 2012

Summary of driver: It is a 10-year framework, rather than a detailed strategy for delivery.  The strategy document states that it ‘focuses on information in its broadest sense, including the support people need to navigate and understand the information available’ (2012: 5). The rationale given for this is to ensure that information is available in ways that reduce health inequalities, rather than being increased as a result of the ‘digital by default’ approach in the broader strategy (2012: 15).

Key features of driver:

Changes to national information delivery: NHS Choices and NHS Direct will be replaced with ‘a new, single website “portal”
provided by the Government from 2013.

Support and information: The strategy makes several references to ‘support’. These references can be used to
promote information services.

Health literacy: The strategy supports the development of health literacy (2012: 54). It suggests that health trainers may play a role in supporting health literacy, although this is also a role on which health information services and health libraries can lead.

Information skills: The strategy indicates that health and social care professionals are key ‘information givers’ and that they need to have relevant skills to offer information (2012: 67).

Service integration implications: There is an explicit expectation that patients’ NHS Number will be used as a means
to identify individuals and to integrate their experience of care.

Primary audience: All NHS Trusts.

Impact on library policy/practice: Despite the statement that the strategy concerns ‘information in its broadest sense’, the main focus of the strategy is on data and the role that data can play in supporting high-quality integrated services.  The strategy does not discuss libraries or information services, but it emphasises the importance of support, information skills and health literacy, which provide potential opportunities for library and information service providers. The only explicit reference to information services is that ‘the NHS Commissioning Board will wish to consider publishing commissioning guidance on support, information and advocacy services’ (2012: 66); such guidance could be valuable for ensuring the future of public-facing services.

Case studies / Local service profile examples mapping to this driver: None as of 21.8.12

Date last updated: 20.9.12

Due for review: 21.8.13

Group member responsible: Not yet identified

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