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The power of information

Chapter 1
What is the information strategy for?

                             Good information is an
                             important part of making sure
                             people stay healthy and get the
                             best care. It supports people to
                             know about care and treatment
                             choices and the quality of
                             services.




                             This strategy is guided by the
                             Health and Social Care Act and
                             covers public health and care
                             and support across England.




                             The focus is on improving access
                             to information and ensuring the
                             support needed to use and
                             understand it.

                             It is about making sure that
                             everyone benefits equally from
                             information about care services.


 1
The power of information
The Information Strategy aims to make the following things happen:


                      Information about me and my care


                                 Change the way health and
                                 care professionals and
                                 organisations use the information
                                 in our own care records, making
                                 sure that our right to have access
                                 to information about us is
                                 supported.




           ?
                                 Make sure that anyone who
                                 needs it gets support to access
                                 and understand information
                                 about their health and care, so
                                 that they have an equal say
                                 and can be active in their own
                                 care.




                                                                2
The power of information
               Information Links for joined up care


                          Make sure that information we
                          give to any health or care
                          professional is recorded properly
                          and shared safely so that we do
                          not have to keep telling people
                          the same thing again and
                          again.


               Information to improve health and care
               services


                         Have clear ways to get
                         information about health and
                         care services. This will include
                         a website that will link to
                         accessible health and care
                         information you can trust.


               The Information System


                         Encourage health and care
                         professionals to make sure that
                         they listen to our feedback and
                         use information about us to
                         make the care we get better.




 3
The power of information
What the Information Strategy means for me?

This strategy will make a difference to everyone involved in health
and social care including:




                                  Patients or service users




                                  Carers
                                  (Friends or family members
                                  looking after people)




                                  Citizens and members of the
                                  community
                                  (All of us)




                                                                4
The power of information


                     Health and Care professionals
                     (Doctors, nurses, social-workers,
                     care-workers ...)




                     Service providers
                     (People and organisations who
                     provide health and social care
                     services)




                     Commissioners of health and
                     care services
                     (Those who choose and buy
                     services from service providers)




 5
The power of information


                                    Information and IT specialists
                                    (People who make sure that we
                                    can access information on
                                    computers)




                                    System Suppliers
                                    (People who provide the
                                    technology that allows
                                    information to be collected,
                                    stored and studied)




                                    Information Intermediaries
                                    (These are organisations that
                                    take information and data that
                                    is available centrally and
                                    present it in different ways such
                                    as interactive formats or apps)


Each of the following chapter sets out the key ways
that this strategy will affect these different people.


                                                                   6
The power of information

Chapter 2
Information about me and my care


                         Making it easier to look at and
                         share your health and care
                         records will support you to take
                         control of your own care and
                         work with professionals to make
                         sure that there is ‘no decision
                         about me without me’.




                         New technologies will help us all
                         to get more involved with how
                         health and care services are run.




                         However, we want to make
                         sure that your confidential
                         information is kept safe and you
                         can say who can look at it.



 7
The power of information
               Things that will happen:




                         Health and care professionals
                         and organisations will be asked
                         to make sure they keep clear
                         records about your health care.




                         They will make sure that your
                         right to have access to your
                         records and information about
                         you is supported.




                         We will be able to see our GP
                         records online by 2015. In time
                         we will be able to see other
                         records about our care online.




                                                       8
The power of information

                     Commissioners and providers will
                     be expected to make sure that
                     anyone who needs it gets support
                     to access and understand
                     information about their health
                     and care.




                     This will ensure they have an
                     equal say and can be active in
                     their own health care.




                     Information in our care records
                     will be kept safe and confidential.




 9
The power of information
What this means for me:
                    As a patient or service user




                            By 2015 I will be able to see my
                            GP records online. In time I will
                            also be able to see other
                            records about my care online.




                            I will get the support I need to
                            access and understand
                            information about my health
                            and care, so that I have an
                            equal say and can be active in
                            my own health care.




                            It will be important that my
                            information is only shared with
                            the people I choose and those
                            who treat me medically and
                            care for me professionally.



                                                          10
The power of information

                 If I want I will be able to:



                        Use the computer to:
                        ‱     Book appointments and
                              order repeat prescriptions
                              online
                        ‱     Keep in touch with my
                              health and care professionals
                              electronically
                        ‱     Use IT and online services to
                              find out how to keep myself
                              well




                        If I find using computers hard I
                        can ask my health and care
                        providers to give me information
                        in a way that I can understand.




11
The power of information

                               As a carer



                          I will be able to access health
                          and care records about the
                          person / people I care for online
                          if I have their permission. This will
                          help me to give better support
                          to the person/people I care for.




            As a health and care professional




                          Using IT more to communicate
                          with patients and service users
                          will support me to provide better
                          services and free up my time for
                          those who need face to face
                          care.




                                                           12
The power of information



                     I will have a duty to allow my
                     patients or clients to access their
                     online records and support them
                     to understand what they mean.




                     I must make sure that records
                     are shared safely so that
                     information can be used to
                     improve a person’s care and
                     make services better for
                     everyone.




13
The power of information

                   As a service provider




                      My organisation will make a plan
                      and timetable for all of our
                      patients and service users to
                      have online access to their care
                      records and other services in
                      time.

                      We will provide support to
                      enable everyone to access and
                      understand these services.




                                                  14
The power of information

Chapter 3
Linking Information for joined up care

                            This is about recording and
                            sharing information about our
                            health and care so that all the
                            different professionals who may
                            look after us can work together
                            to give us better treatment and
                            care.



                            By 2015 improvements in the
                            way that GPs and hospitals
                            record and share our records
                            and test results will mean that
                            we get treatment more quickly
                            and safely.



                            In time professionals will be able
                            to access bits of information
                            taken from all of our records that
                            will support them to find out things
                            like who has access to services,
                            what services need to improve,
                            which treatments work and how
                            services can be improved to be
                            safer and save money.


15
The power of information
               Things that will happen:


                         Information we give to any
                         health or care professional will
                         be recorded properly and
                         shared safely so that we do not
                         have to keep telling people the
                         same thing again and again.




                         Our own unique NHS number
                         will be used on all of our records
                         so that they are kept together.




                         Professionals will be able to
                         access any useful records about
                         us online but it will be done in a
                         way that will keep our
                         information safe and in one
                         place.




                                                       16
The power of information


                              Services across England will
                              have to use IT systems that can
                              work together so that information
                              can be shared wherever you
                              are.




                              Health and care professionals
                              must be willing to work together
                              on this to make it work.




What this means for me:
         As a citizen and member of the community




                              I will be able to get more useful
                              information about services and
                              how good they are. This will help
                              me to make better choices.




17
The power of information

                        Information from my care
                        records that will not give away
                        who I am will be used to make
                        care services and treatments
                        better so that everyone’s health
                        is improved and money is spent
                        wisely.




                As a patient or service user



                        Wherever I go for my care
                        services, from my GP, to a care
                        home or A&E, professionals will
                        be able to get the information
                        they need about me to make
                        sure I get the best care.




                       The results of important tests will
                       be available electronically so
                       that professionals can find out
                       how to make me better quicker
                       and I will not have to worry for so
                       long.




                                                     18
The power of information

                                As a carer

                         Good information for
                         professionals will make the
                         services they provide better.
                         This will make it easier and
                         quicker for me to explain what
                         care and treatment the person
                         I care for is getting.




             As a health and care professional



                          By recording and sharing
                          information better, I will know
                          more about what my clients
                          need and how well the care I
                          am giving them is working.



                         I will make sure that I record the
                         right information about any
                         treatments and care I give as
                         soon as possible after it is given.
                         I will follow national standards
                         and link it to the personal NHS
                         number.


19
The power of information
                      I will share this information with
                      other health and care
                      professionals and the Health
                      and Social Care Information
                      Centre where it can be held
                      and linked securely. This will help
                      us all improve health and care.




                   As a service provider



                      I will have detailed information
                      about my organisation and the
                      people we support which will
                      help us make our services better.




                   As a commissioner



                      I will be able to check on the
                      quality of care that services
                      provide and make sure that we
                      get value for money.




                                                     20
The power of information
Chapter 4
Information to improve health and care services

                           Being able to find useful
                           up-to-date information helps us
                           to make choices about our
                           health. It is also important that
                           we can give feedback about
                           what we think of the services
                           and care we get so that they
                           can be improved.




                           This chapter looks at information
                           about what we think about the
                           care we get, how well hospitals
                           work, what health problems we
                           get and what works best to treat
                           them.




                           By making it easier for everyone
                           to get this information from one
                           website we can all begin to
                           make healthier lifestyle choices
                           for ourselves.



21
The power of information
               Things that will happen:


                         From March 2013 it will be easier
                         to find the information we need
                         about our health care.
                         ‱     999 will be the number to
                               call for emergencies
                         ‱     111 will be the number to
                               call if you need medical
                               help or advice straight away
                               but it is not life threatening
                         ‱     An ‘online portal’ will link us
                               to information we can trust


                         Opportunities for other providers
                         to support the Government’s
                         core information by producing
                         information that is accessible to
                         more people.


                         More specialist information
                         about telling us what care and
                         treatment works best will help us
                         to compare services.


                         More feedback will be collected
                         so that services can be made
                         better.



                                                         22
The power of information
What this means for me:

                     As a patient or service user



                           A new national information
                           portal will make it easier for me
                           to find information about my
                           health and care that I can trust.
                           It will help me to:




                            Know more about any health
                            conditions I have.




                           Know more about what care
                           services or clinical teams offer so
                           that I can make choices about
                           my care. I will get support to do
                           this if I need it.




23
The power of information
                     I will be able to easily leave
                     feedback about what I think
                     about the care I have had
                     whenever I use health and
                     care services. I will know that it
                     will be used to make services
                     better.


                     I will know that everyone will
                     have a chance to say what
                     they think about their care and
                     treatment, even if they are not
                     able to use the information
                     portal.




                           As a carer



                     I will be able to use the ‘online
                     portal’ to get the information I
                     need to help the person I care
                     for without having to look in lots
                     of different places. I will be able
                     to find out about support I can
                     get to help me financially and
                     give me a break.



                                                    24
The power of information

       As a citizen and member of the community




                            I will be able to get information
                            online that will help me to
                            decide if I need medical help
                            and find out what I can do to
                            lead a healthier life.




                            I will be able to find out about
                            groups and support networks
                            that I can join to improve my
                            health and wellbeing.




                            I will be able to find out which
                            organisations and professionals
                            are doing the best job.




25
The power of information
               As a health and care professional


                               My patients and service users will
                               know more about their own
                               health needs and which are the
                               best services for them.
                               I will need to involve them in
                               deciding which services they
                               need, but the fact that they
                               know more and are able to work
                               with me to stay well will save me
                               time in the future.


                               My time will also be saved
                               because I can quickly get my
                               patients’/ services users’ records
                               which will contain other useful
                               information about care,
                               treatment and tests they have
                               had elsewhere.

       As a service provider
                               The public will be able to find out
                               more about the quality of the
                               services my organisation provides.
                               I will also be able to find out what
                               people who have used our
                               services thought about them and
                               this will help me to make things
                               better.

                                                              26
The power of information
Chapter 5
The information system


                         The Government will work to
                         make it possible for all the
                         information systems that different
                         organisations use to work better
                         together so that information can
                         be shared.




                         As well as investing in equipment,
                         key health and care staff will be
                         responsible for collecting and
                         recording all the information.




                         They will be trained and
                         supported to make sure the
                         system works and health and
                         care professionals will be
                         encouraged to work with them.



27
The power of information

                      The Health and Social Care
                      Information Centre will be an
                      online place where all NHS,
                      public health and social care
                      information in England will be
                      kept. Other organisations and
                      the public will be able to access
                      this information to make health
                      and social care better.


                    Things that will happen:


                      The Information Centre will be
                      where all collected feedback
                      and health and care
                      information is kept and where
                      everybody looks for information.




                      The Information Centre will
                      provide a special secure service
                      that allows health professionals
                      and scientists to get information
                      about the health of the
                      population. This will help them to
                      develop better treatments and
                      medicines for the future.


                                                    28
The power of information
What this means for me:

As a patient or service user,
as a carer, as a citizen and
a member of the community




                                I will know more about my own
                                health and the quality and type
                                of services that I can get.




                                Whilst my personal details are
                                kept private, information about
                                my general health and care
                                and what I think about it will be
                                shared and compared with
                                information about everyone else.




                                This is to make sure that services
                                are made better and that we all
                                have equal access to them.


29
The power of information
As a health and care professional, as a service provider, as a
commissioner of care services




                                  I will have a much clearer
                                  picture of the health history of
                                  individuals.




                                  I will be able to use this to
                                  contribute to improvements in
                                  health and care services and
                                  research that will improve the
                                  general health of people in
                                  England.




                                  I can use information from the
                                  Information Centre to compare
                                  treatments and services and find
                                  out what works best to improve
                                  care.




                                                                 30
The power of information




31
The power of information

                       We hope that this information
                       has been helpful.




                       If you have any questions please
                       ask your health and social care
                       professionals to explain more.




                       They may be able to direct you
                       to other people or organisations
                       who can support you to get the
                       best access to health and social
                       care.




                                                   32
Who to call?
The power of information

                   Call 999 if:
                   you believe you or someone
                   else is in a life threatening
                   situation.




                   Call 111 if:
                   ‱   You need medical help
                       fast but it is not a 999
                       emergency



                   ‱   You think you need to go to
                       Accident and Emergency
                       or need other NHS urgent
                       care services



                   ‱   You do not know who to
                       call or you do not have a
                       GP



                   ‱   You need health
                       information or someone to
                       help you decide what to do



33
Easy read edited and illustrated
by CHANGE
www.changepeople.co.uk

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The power of information - easy read version

  • 1.
  • 2. The power of information Chapter 1 What is the information strategy for? Good information is an important part of making sure people stay healthy and get the best care. It supports people to know about care and treatment choices and the quality of services. This strategy is guided by the Health and Social Care Act and covers public health and care and support across England. The focus is on improving access to information and ensuring the support needed to use and understand it. It is about making sure that everyone benefits equally from information about care services. 1
  • 3. The power of information The Information Strategy aims to make the following things happen: Information about me and my care Change the way health and care professionals and organisations use the information in our own care records, making sure that our right to have access to information about us is supported. ? Make sure that anyone who needs it gets support to access and understand information about their health and care, so that they have an equal say and can be active in their own care. 2
  • 4. The power of information Information Links for joined up care Make sure that information we give to any health or care professional is recorded properly and shared safely so that we do not have to keep telling people the same thing again and again. Information to improve health and care services Have clear ways to get information about health and care services. This will include a website that will link to accessible health and care information you can trust. The Information System Encourage health and care professionals to make sure that they listen to our feedback and use information about us to make the care we get better. 3
  • 5. The power of information What the Information Strategy means for me? This strategy will make a difference to everyone involved in health and social care including: Patients or service users Carers (Friends or family members looking after people) Citizens and members of the community (All of us) 4
  • 6. The power of information Health and Care professionals (Doctors, nurses, social-workers, care-workers ...) Service providers (People and organisations who provide health and social care services) Commissioners of health and care services (Those who choose and buy services from service providers) 5
  • 7. The power of information Information and IT specialists (People who make sure that we can access information on computers) System Suppliers (People who provide the technology that allows information to be collected, stored and studied) Information Intermediaries (These are organisations that take information and data that is available centrally and present it in different ways such as interactive formats or apps) Each of the following chapter sets out the key ways that this strategy will affect these different people. 6
  • 8. The power of information Chapter 2 Information about me and my care Making it easier to look at and share your health and care records will support you to take control of your own care and work with professionals to make sure that there is ‘no decision about me without me’. New technologies will help us all to get more involved with how health and care services are run. However, we want to make sure that your confidential information is kept safe and you can say who can look at it. 7
  • 9. The power of information Things that will happen: Health and care professionals and organisations will be asked to make sure they keep clear records about your health care. They will make sure that your right to have access to your records and information about you is supported. We will be able to see our GP records online by 2015. In time we will be able to see other records about our care online. 8
  • 10. The power of information Commissioners and providers will be expected to make sure that anyone who needs it gets support to access and understand information about their health and care. This will ensure they have an equal say and can be active in their own health care. Information in our care records will be kept safe and confidential. 9
  • 11. The power of information What this means for me: As a patient or service user By 2015 I will be able to see my GP records online. In time I will also be able to see other records about my care online. I will get the support I need to access and understand information about my health and care, so that I have an equal say and can be active in my own health care. It will be important that my information is only shared with the people I choose and those who treat me medically and care for me professionally. 10
  • 12. The power of information If I want I will be able to: Use the computer to: ‱ Book appointments and order repeat prescriptions online ‱ Keep in touch with my health and care professionals electronically ‱ Use IT and online services to find out how to keep myself well If I find using computers hard I can ask my health and care providers to give me information in a way that I can understand. 11
  • 13. The power of information As a carer I will be able to access health and care records about the person / people I care for online if I have their permission. This will help me to give better support to the person/people I care for. As a health and care professional Using IT more to communicate with patients and service users will support me to provide better services and free up my time for those who need face to face care. 12
  • 14. The power of information I will have a duty to allow my patients or clients to access their online records and support them to understand what they mean. I must make sure that records are shared safely so that information can be used to improve a person’s care and make services better for everyone. 13
  • 15. The power of information As a service provider My organisation will make a plan and timetable for all of our patients and service users to have online access to their care records and other services in time. We will provide support to enable everyone to access and understand these services. 14
  • 16. The power of information Chapter 3 Linking Information for joined up care This is about recording and sharing information about our health and care so that all the different professionals who may look after us can work together to give us better treatment and care. By 2015 improvements in the way that GPs and hospitals record and share our records and test results will mean that we get treatment more quickly and safely. In time professionals will be able to access bits of information taken from all of our records that will support them to find out things like who has access to services, what services need to improve, which treatments work and how services can be improved to be safer and save money. 15
  • 17. The power of information Things that will happen: Information we give to any health or care professional will be recorded properly and shared safely so that we do not have to keep telling people the same thing again and again. Our own unique NHS number will be used on all of our records so that they are kept together. Professionals will be able to access any useful records about us online but it will be done in a way that will keep our information safe and in one place. 16
  • 18. The power of information Services across England will have to use IT systems that can work together so that information can be shared wherever you are. Health and care professionals must be willing to work together on this to make it work. What this means for me: As a citizen and member of the community I will be able to get more useful information about services and how good they are. This will help me to make better choices. 17
  • 19. The power of information Information from my care records that will not give away who I am will be used to make care services and treatments better so that everyone’s health is improved and money is spent wisely. As a patient or service user Wherever I go for my care services, from my GP, to a care home or A&E, professionals will be able to get the information they need about me to make sure I get the best care. The results of important tests will be available electronically so that professionals can find out how to make me better quicker and I will not have to worry for so long. 18
  • 20. The power of information As a carer Good information for professionals will make the services they provide better. This will make it easier and quicker for me to explain what care and treatment the person I care for is getting. As a health and care professional By recording and sharing information better, I will know more about what my clients need and how well the care I am giving them is working. I will make sure that I record the right information about any treatments and care I give as soon as possible after it is given. I will follow national standards and link it to the personal NHS number. 19
  • 21. The power of information I will share this information with other health and care professionals and the Health and Social Care Information Centre where it can be held and linked securely. This will help us all improve health and care. As a service provider I will have detailed information about my organisation and the people we support which will help us make our services better. As a commissioner I will be able to check on the quality of care that services provide and make sure that we get value for money. 20
  • 22. The power of information Chapter 4 Information to improve health and care services Being able to find useful up-to-date information helps us to make choices about our health. It is also important that we can give feedback about what we think of the services and care we get so that they can be improved. This chapter looks at information about what we think about the care we get, how well hospitals work, what health problems we get and what works best to treat them. By making it easier for everyone to get this information from one website we can all begin to make healthier lifestyle choices for ourselves. 21
  • 23. The power of information Things that will happen: From March 2013 it will be easier to find the information we need about our health care. ‱ 999 will be the number to call for emergencies ‱ 111 will be the number to call if you need medical help or advice straight away but it is not life threatening ‱ An ‘online portal’ will link us to information we can trust Opportunities for other providers to support the Government’s core information by producing information that is accessible to more people. More specialist information about telling us what care and treatment works best will help us to compare services. More feedback will be collected so that services can be made better. 22
  • 24. The power of information What this means for me: As a patient or service user A new national information portal will make it easier for me to find information about my health and care that I can trust. It will help me to: Know more about any health conditions I have. Know more about what care services or clinical teams offer so that I can make choices about my care. I will get support to do this if I need it. 23
  • 25. The power of information I will be able to easily leave feedback about what I think about the care I have had whenever I use health and care services. I will know that it will be used to make services better. I will know that everyone will have a chance to say what they think about their care and treatment, even if they are not able to use the information portal. As a carer I will be able to use the ‘online portal’ to get the information I need to help the person I care for without having to look in lots of different places. I will be able to find out about support I can get to help me financially and give me a break. 24
  • 26. The power of information As a citizen and member of the community I will be able to get information online that will help me to decide if I need medical help and find out what I can do to lead a healthier life. I will be able to find out about groups and support networks that I can join to improve my health and wellbeing. I will be able to find out which organisations and professionals are doing the best job. 25
  • 27. The power of information As a health and care professional My patients and service users will know more about their own health needs and which are the best services for them. I will need to involve them in deciding which services they need, but the fact that they know more and are able to work with me to stay well will save me time in the future. My time will also be saved because I can quickly get my patients’/ services users’ records which will contain other useful information about care, treatment and tests they have had elsewhere. As a service provider The public will be able to find out more about the quality of the services my organisation provides. I will also be able to find out what people who have used our services thought about them and this will help me to make things better. 26
  • 28. The power of information Chapter 5 The information system The Government will work to make it possible for all the information systems that different organisations use to work better together so that information can be shared. As well as investing in equipment, key health and care staff will be responsible for collecting and recording all the information. They will be trained and supported to make sure the system works and health and care professionals will be encouraged to work with them. 27
  • 29. The power of information The Health and Social Care Information Centre will be an online place where all NHS, public health and social care information in England will be kept. Other organisations and the public will be able to access this information to make health and social care better. Things that will happen: The Information Centre will be where all collected feedback and health and care information is kept and where everybody looks for information. The Information Centre will provide a special secure service that allows health professionals and scientists to get information about the health of the population. This will help them to develop better treatments and medicines for the future. 28
  • 30. The power of information What this means for me: As a patient or service user, as a carer, as a citizen and a member of the community I will know more about my own health and the quality and type of services that I can get. Whilst my personal details are kept private, information about my general health and care and what I think about it will be shared and compared with information about everyone else. This is to make sure that services are made better and that we all have equal access to them. 29
  • 31. The power of information As a health and care professional, as a service provider, as a commissioner of care services I will have a much clearer picture of the health history of individuals. I will be able to use this to contribute to improvements in health and care services and research that will improve the general health of people in England. I can use information from the Information Centre to compare treatments and services and find out what works best to improve care. 30
  • 32. The power of information 31
  • 33. The power of information We hope that this information has been helpful. If you have any questions please ask your health and social care professionals to explain more. They may be able to direct you to other people or organisations who can support you to get the best access to health and social care. 32
  • 34. Who to call? The power of information Call 999 if: you believe you or someone else is in a life threatening situation. Call 111 if: ‱ You need medical help fast but it is not a 999 emergency ‱ You think you need to go to Accident and Emergency or need other NHS urgent care services ‱ You do not know who to call or you do not have a GP ‱ You need health information or someone to help you decide what to do 33
  • 35. Easy read edited and illustrated by CHANGE www.changepeople.co.uk