Information = power?
6 March 2006 Mark Duman Chair, Patient Information Forum
The White Paper and beyond
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
“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” Guardian Thursday, January 6 2005
‘Better information, better choices, better health’
Information Prescriptions
Community info-mediaries
Patient Information Bank
Information Prescriptions
Community info-mediaries
Patient Information Bank
Power questions
Information Accreditation System (IAS)
January 2006 - DH Choice
About 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.
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)
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
'Supporting people with long-term conditions to self-care'
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."
“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
Some solutions
March 1, 2006
Computer Technology Opens a World of Work to Disabled People
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
Health Rights Information Scotland
Evaluation of their easily accessible leaflets.
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.
Connect – 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.
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
Health Librarians
Health professionals?
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 carers
www.pickereurope.org
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?
Sharing
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’
Members include
- NHS Trusts,
- NHS 24,
- 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
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)
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?
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