Information = power?         Mark Duman         6 March 2006 Chair, Patient Information Forum
Scope•   The White Paper and beyond•   Some solutions•   Sharing                                 2
The White Paper and beyond
Choosing Health• Sets out the key principles for supporting the public to  make more healthier and informed choices in nin...
“The three-year plan to put electronic  information ‘at the centre of health’ marks  one of the biggest strategic shifts i...
‘Better information, better choices,    better health’• Information Prescriptions• Community info-mediaries• Patient Infor...
7
‘Better information, better choices,    better health’• Information Prescriptions• Community info-mediaries• Patient Infor...
January 2006 - DH ChoiceAbout Choose and Book• By December 2005 all patients in England will be offered at least four   pr...
10
The new White Paper 5.24 “give all people with long-term health and  social care needs and their carers an  ‘information ...
The new White Paper cont… 2.29 Life Checks 2.91 QOF Rewards 4.81 Improving Immunization Rates 4.101 Improving End-of-L...
Supporting people with long-term conditions to self-car•   Examples of what central government, professionals and PCTs    ...
“Now I feel tall”I strongly encourage all NHS organisations to take a close   look at how they deliver their services and ...
Some solutions
“Such arrangements are bringingMarch 1, 2006        jobs to thousands of people with                     disabilities, inc...
NCC & Social Marketing – April ‘06•   Integrate health understanding and improvement education & action into all    of our...
Lloydspharmacy                 “Ever since                 Lloydspharmacy launched                 this free [diabetes tes...
Health Rights InformationScotland                                      • Clear, accurate and up-to-                       ...
National Information Forum                  A voluntary organisation                   committed to encouraging           ...
Connect www.ukconnect.org                    – the     communication disability network•   Fifty people with experience of...
National Programme for IT• NHS Care Record Service• NHS.uk• NHS Direct Online• Healthspace• Choose & Book re appointments ...
Advocacy•   Expert Patient Programme•   Patient Care Advisors (PCAs)•   Health Trainers•   Community info-mediaries•   Hea...
Is the NHS getting better or worse?• 1 million patients surveyed between 1998-2005• Over half of their priorities were inf...
Summary•   Information for “patients” has come of age•   Seems that ‘everybody’s doing it’•   But…still issues of quality,...
Sharing
The Patient Information Forum (PiF)•   Established with King’s Fund in 1997•   Original focus on acute trusts•   Umbrella ...
28
PiF Current Products & Services•   [PiF aware] – daily/ weekly email alerts•   Website•   Annual conference(s)•   Workshop...
30
Top tips•   Health: Does it reinforce (or not contradict) our support for health and healthy    lifestyles?•   Care: Does ...
32
In summary“Patients will need better information if they are going to improve their   lifestyle, manage their disease, and...
Contact DetailsMark DumanChairHandel House13 Park RoadManchesterM8 4HTTel: 07985 639 887Email: chair@pifonline.org.ukWeb: ...
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Knowledge in Power

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Knowledge in Power

  1. 1. Information = power? Mark Duman 6 March 2006 Chair, Patient Information Forum
  2. 2. Scope• The White Paper and beyond• Some solutions• Sharing 2
  3. 3. The White Paper and beyond
  4. 4. Choosing Health• Sets out the key principles for supporting the public to make more healthier and informed choices in nine areas: – accidents – alcohol – diet and nutrition – inequalities – mental health – physical activity – sexual health – substance misuse, – and tobacco.• Health Trainers; Health Direct; Personal Health Guides• National Collaboration on Health Literacy - May ‘06 4
  5. 5. “The three-year plan to put electronic information ‘at the centre of health’ marks one of the biggest strategic shifts in the NHS since it was created in 1948.For the first time, dispensing information will be as important as dispensing pills or performing operations”Thursday, January 6 2005 5
  6. 6. ‘Better information, better choices, better health’• Information Prescriptions• Community info-mediaries• Patient Information BankSource: www.dh.gov.uk/assetRoot/04/09/85/99/04098599.pdf 6
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  8. 8. ‘Better information, better choices, better health’• Information Prescriptions• Community info-mediaries• Patient Information Bank• Power questions• Information Accreditation System (IAS)Source: www.dh.gov.uk/assetRoot/04/09/85/99/04098599.pdf 8
  9. 9. January 2006 - DH ChoiceAbout Choose and Book• By December 2005 all patients in England will be offered at least four providers for elective care.How we are treated• People will be able to record their lifestyle preferences on electronic medical records. This will mainly happen through Healthspace.Prescriptions• By December 2004 patients will be able to pick up repeat prescriptions from a pharmacy of their choice. By 2005 physiotherapists, radiographers, podiatrists, optometrists and pharmacists will have prescribing authority.Primary care• People will be able to access primary care services in more flexible ways such as walk in centres at train stations or football stadiums. Primary care practices will be able to offer a wider range of services such as diagnostics.Information to help patients choose• How patients and the public will be supported to make informed choices about their health and healthcare. 9
  10. 10. 10
  11. 11. The new White Paper 5.24 “give all people with long-term health and social care needs and their carers an ‘information prescription’ 5.25 “By 2008, we would expect everyone with a long-term condition … to routinely receive information about their condition” 5.26 “By 2010 we would expect everyone with a long-term condition to be offered a care plan.” (good practice guidance early in 2007) 11
  12. 12. The new White Paper cont… 2.29 Life Checks 2.91 QOF Rewards 4.81 Improving Immunization Rates 4.101 Improving End-of-Life Care 8.32 Patient Safety Outside of Hospitals 12
  13. 13. Supporting people with long-term conditions to self-car• Examples of what central government, professionals and PCTs have done and need to do in making sure those with chronic illness can manage their health effectively.• Information and tools are cited as important for empowering people: – e.g. NHS Direct Interactive TV helps to keep elderly people up- to-date and informed, and the medium is effective because they usually both hard to reach and tend to suffer from long-term conditions.• However, it warns that many people without access to the internet who "tend to make little use of self care information" must be helped.• The role of health professionals is to direct people towards meaningful information and give "guidance on how to access it so that people feel confident enough to use it." 13
  14. 14. “Now I feel tall”I strongly encourage all NHS organisations to take a close look at how they deliver their services and to ask their patients if their emotional needs are being met as well as their physical ones.They should ask patients if they are:• getting good treatment in a comfortable, caring and safe environment, delivered in a calm and reassuring way• having information to make choices, to feel confident and feel in control• being talked to and listened to as an equal, and• being treated with honesty, respect and dignity.Sir Nigel Crisp NHS Chief Executive, November 2005 14
  15. 15. Some solutions
  16. 16. “Such arrangements are bringingMarch 1, 2006 jobs to thousands of people with disabilities, including those withComputer spinal cord injuries and vision loss. Technology Fast computers and broadband Opens a World of connections have become so Work to Disabled inexpensive and reliable that People location is now not an issue for certain jobs, like customer service.” 16
  17. 17. NCC & Social Marketing – April ‘06• Integrate health understanding and improvement education & action into all of our lives and communities to achieve social justice, tackle wider causes of ill health, reduce childhood poverty and support healthier ways of living – Maximise the effectiveness of NHS Stop Smoking Services – Improve services to help people who are overweight or obese & prevent weight gain from an early age and encourage healthy eating – Strengthen services to improve sexual health – Deliver better services to prevent & treat alcohol problems – Improve the lives of those who face lifelong illnesses, particularly older people – Provide support to improve mental well-being• Develop, implement and evaluate a co-ordinated, evidence-based and cost- effective approach to the management and delivery of all future marketing communications activity related to health improvement 17
  18. 18. Lloydspharmacy “Ever since Lloydspharmacy launched this free [diabetes testing] service in 2003, we have tested over 750,000 people.” 18
  19. 19. Health Rights InformationScotland • Clear, accurate and up-to- date information about patients rights should be more widely available and consistent. • Help NHS organisations reduce the work involved in them producing their own • Patients will have a better understanding of their rights and choices and feel more confident making decisions about their health and interacting with NHS staff. 19 www.scotconsumer.org.uk/hris/leaflets/other2.htm
  20. 20. National Information Forum A voluntary organisation committed to encouraging the provision of accessible information, by every means possible, for disabled people, asylum seekers, refugees and anyone else disadvantaged in gaining access to information.www.nif.org.uk 20
  21. 21. Connect www.ukconnect.org – the communication disability network• Fifty people with experience of long-term aphasia• Lack of information was a major obstacle. They described the frustrating experience of being given information at the wrong time or in a form they could not understand.• Given information when they could not take it in, and they had no way of re- visiting it.• Their aphasia made it difficult for them to make some initial enquiries: You cannot always ask.... Access to information was severely restricted. 21
  22. 22. National Programme for IT• NHS Care Record Service• NHS.uk• NHS Direct Online• Healthspace• Choose & Book re appointments 22
  23. 23. Advocacy• Expert Patient Programme• Patient Care Advisors (PCAs)• Health Trainers• Community info-mediaries• Health Librarians• Health professionals? 23
  24. 24. Is the NHS getting better or worse?• 1 million patients surveyed between 1998-2005• Over half of their priorities were information-led: – Fast access to health advice – Involvement in decisions and respect for patients’ preferences – Clear, comprehensible information and support for self-care – Emotional support and alleviation of anxiety – Involvement of family and friends and support for carerswww.pickereurope.org 24
  25. 25. Summary• Information for “patients” has come of age• Seems that ‘everybody’s doing it’• But…still issues of quality, access and utility• Widening the health inequalities gap?• Where is consistency, joined-up thinking, and help at grassroots level? 25
  26. 26. Sharing
  27. 27. The Patient Information Forum (PiF)• Established with King’s Fund in 1997• Original focus on acute trusts• Umbrella group of just under 300 members involved in ‘health communication’ • NHS Trusts, and NHS24, NHS Direct, NHS Direct Wales, Picker , NICE, UK National Screening Committee (50%) • Commercial e.g. BUPA, EMIS, Pfizer (20%) • Patient groups e.g. Blood Pressure Association, British Lung Foundation, Diabetes UK, MS Society (20%)• Funding primarily from membership dues• Efforts of Steering Group and Regional Co-ordinators members are purely voluntary 27
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  29. 29. PiF Current Products & Services• [PiF aware] – daily/ weekly email alerts• Website• Annual conference(s)• Workshops – 25 people meet to ‘improve’ a common theme – Health information centres – Information on screening – Patient access to medical records• Sharing experience, policies and proposals• Training (with BMA Library and ABPI IPI) 29
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  31. 31. Top tips• Health: Does it reinforce (or not contradict) our support for health and healthy lifestyles?• Care: Does it show respect for the audience and avoid unfair stereotypes? Does the tone of the wording show care and empathy?• Professionalism: Does it demonstrate pride in what we are doing? Are the spelling and grammar right? Are we able to challenge poor standards in any existing communications?• Efficiency: Is the budget right for the task? Are the tone and style right for the audience you are speaking to?• Equality: Do the images span ages and cultures (where appropriate)?• Clear: Is it easy to read and easy to understand?• Straightforward: Does it avoid gimmicks and over-complicated design or wording?• Honest: Does it avoid misleading information and false promises? Does it withhold information that the receiver has a right to know?• Accessible: Has it been tested with the target audience? Do they understand it? Are versions in other languages, symbols or formats needed? Is it easy to obtain?• Respectful: Does it show respect for the receivers’ feelings and beliefs? Does that ‘funny’ drawing or headline risk offending anyone? 31
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  33. 33. In summary“Patients will need better information if they are going to improve their lifestyle, manage their disease, and participate in complex decisions about treatment.Better health-literacy education in schools will help, as will better-written health materials and well-trained educators for patients.But a great deal could be accomplished if doctors and other health professionals took time, at the end of each consultation, to make sure the patient had understood the key points discussed, and that they felt free to ask questions.”Source: Taking health literacy seriously. The Lancet 2005; 366:95 33
  34. 34. Contact DetailsMark DumanChairHandel House13 Park RoadManchesterM8 4HTTel: 07985 639 887Email: chair@pifonline.org.ukWeb: www.pifonline.org.uk 34

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