Power to the patient
pharmafile | October 16, 2003 | Feature | Medical Communications |Â Â consumers assocation, patient informationÂ
Patient information is a growing issue. Publicity around issues such as the variation in treatment across the country – so-called postcode prescribing – and the high profile inquiries into the Bristol Royal Infirmary and Dr Shipman have contributed to a climate in which patients are increasingly seeking to take more active control of their healthcare.
"Information is about giving control," said the Association for the Victims of Medical Accidents. "Patients in the past were kept very much in a vacuum when it came to information about their condition or treatment and therefore had to relinquish control over their health to healthcare professionals."
Sources of information about health are increasing in number, in particular with technological advances. However, the reliability of much of this information is unclear. Those providing the information may be driven by potential financial gain or personal bias that may conflict with the interests of the patient. Furthermore, there is little consumer protection against inaccurate, misleading information. For example, the Medicines Control Agency (MCA) has no power to enforce closure of unscrupulous websites.
"Because the public cannot trust 'official' information, they have begun to take seriously alternative perspectives from 'unofficial' sources (some reputable, some bogus)…All this adds to the cacophony of competing voices, so that people must shout even louder," said Dr Peter Andras and Dr Bruce Charlton, at the University of Newcastle.
Politically, the UK Government is encouraging increased self-management and the European Commission is seeking to develop a European strategy for patient information.
Our research
Against this backdrop, the Consumer's Association (CA) has sought to identify what information patients, and others, need about medicines, therapies and illness – and to make practical recommendations for addressing current gaps and deficiencies in this area. The aim is to help enable patients and healthcare professionals to work together to achieve the best possible health outcomes.
CA's policy report draws on:
- a scoping workshop with participation from interested stakeholders, including representatives from patient groups, industry and Government
- wider consultation with the voluntary sector, professionals bodies, health information providers and the pharmaceutical industry
- supporting academic literature.
As with the term 'patient-centred', the meaning of 'information need' is often treated as self-evident or intuitive. However, the assumption of a common understanding disguises a multiplicity of meanings in practice, which can make the difference between an effective and ineffective intervention. Therefore, for the purposes of this report, 'information need' is defined as 'an individual's capacity to benefit from information'.
"The inhaler users we talked to wanted practical, personalised information, presented in a way that they could relate to," said King's College London Pharmacy Practice Group. "Their gold standard was individual advice from a healthcare professional but they wanted other sources of information too. Users with poor English could not read the manufacturers PIL [Patient Information Leaflet] inside their inhaler packs. On average, they had worse technique than those with good English."
Key findings
Our consultation sought to identify information need. This was done by analysing the strengths and weaknesses of, and different approaches to, current patient information materials, to guide us towards good practice. The responses received highlighted gaps and deficiencies and thereby revealed a number of areas in urgent need of attention.
Improving education
Education needs of both the public and the health profession were repeatedly raised. Education was felt to be particularly important because of the increasing emphasis on self-management of chronic conditions. Another key factor was the need for critical appraisal skills to help make sense of the mass of information that is becoming available.
"Aspirin is often prescribed to those at risk of stroke, or who have already had a first episode," said The Stroke Association. "We are aware that there are others who decide to take aspirin to prevent stroke or heart attack without being advised to do so. Our advice is that no medication should be taken on a regular basis without a doctors advice. As with any medication, there may be side-effects, or it may interact with other medication they are taking. This needs to be emphasised in the information leaflets accompanying medicines together with awareness raising in the general public."
It is clear that much still needs to be done to enable healthcare professionals to overcome inherent values and attitudes that hinder communication with patients. Courses in communication vary significantly both in terms of content and the priority they are accorded.
"The starting point is that staff do not generally appreciate the importance of information to patients and carers," said mental health charity Rethink. "Patient and carer involvement in their training is negligible. It follows that meeting information needs is not recognised as a priority."
Meeting diverse needs
Reported areas of neglect, in relation to meeting the diversity of patient need, include people with specific communication needs, such as people with visual or auditory impairments, learning difficulties or mental health problems. Others are carers, those in 'hard to hear' (previously defined as 'hard to reach') groups, children and people whose first language is not English.
"People with autism spectrum disorders have complex impairment of communication. This can manifest itself in many different ways," said the National Autistic Society. "Some people will be mute, whilst others display complex, grammatically correct speech. Some may attempt to communicate with others but fail to understand the reciprocal nature of typical social interaction, whilst others may accept attention from others but do not reciprocate. There are a number of ways that explanations can be given that will aid a person with an autism spectrum disorder to understand better."
Providing insufficient information about medicines
Insufficient medicines information was a commonly reported problem and refers both to OTC medicines and prescription-only medicines (POM). This is particularly significant in the area of OTC medicines given the increasing shift of medicines from POM to pharmacy and General Sales List (GSL) status. The complaints reported about POM information were largely about the failings of the PIL. Importance was also placed on the way that risk information and uncertainty is conveyed.
"One of the most important issues in this area is that patients are not given enough information about their medication and potential consequences of its misuse," said Project SPEAR, a support group for people who self-harm. "GPs need to take time to explain this and also give the patients a choice as to whether its right for them. A lot of people are unaware of the dangers of repeated small overdoses on their bodies."
Additionally, responses highlighted a need for local NHS trusts to develop clear standards for all aspects of patient, carer and public information work, including professional communication that is subject to internal and external scrutiny. "Too much [of the] information given to patients seeks to encourage compliance with what is proposed, rather than to engage patients with the choices which are theirs to make, and thereby empower them," said the Bristol Royal Infirmary Inquiry.
The need for a recognised process of accreditation for patient information materials is also evident. However, while there appears to be a general consensus of the wide-ranging patient, carer and public information needs, there is little evidence of good (and bad) practice being shared. Improvement in this regard would serve both to prevent unnecessary duplication of effort and to highlight neglected areas of need.
Conclusions
Our research has clearly demonstrated that a single blanket solution will not suffice in this area and that 'more' does not necessarily mean 'better'. Information needs are complex and will only be met when the purposes behind them are clearly defined and effectively addressed. They can be profoundly affected by variations in skills, abilities, language, mental health and personal and community resources. Crucially, they are highly individual: as well as differing from person to person, they will change throughout the course of illness and treatment. It is a major challenge, in particular for health professionals, to ensure that they are able to respond effectively to this diversity of need. Yet future developments must take this fully into consideration if they are to make a positive impact.
"The best healthcare decisions come out of informed discussions about treatment choices between practitioner and patient, based on mutual respect," said mental health charity MIND.
Recommendations
Many of the recommendations listed below should not require additional financial resources, but the more efficient use of current funding. They will undoubtedly require greater partnership working between the voluntary sector, patient organisations, Government and industry.
One central and impartial source of medicines and treatment information should be established
In response to the need for greater co-ordination, promotion of best practice and developments that meet genuine patient and public need, there should be a central body with a clear remit to drive this forward, in liaison with all relevant stakeholders. This must include information and treatments about medicines acquired privately, as well as through the NHS. In addition to evaluating currently produced information for bias and comprehensiveness, it should establish and oversee a source of funding for independent patient information initiatives. This could be part-funded by the pharmaceutical industry via a tax on sales or a levy linked to the Pharmaceutical Price Regulation Scheme (PPRS).
All information should meet identified high quality standards
Ten core principles should underpin these standards, guiding the development and use of information resources. Information sources should therefore be:
- accessible
- accurate
- appropriate
- consistent
- current
- evidence-based
- impartial
- timely
- transparent
- understandable.
The NHS Information Standards Board should work with existing kite-marking agencies to develop an agreed Code of Conduct and recognised system of accreditation – for both printed materials and websites that provide practical illness-based information.
Medicines education should start in schools
The Government should incorporate medicines education into the school curriculum, so that children develop an awareness of, and respect for, medicines. This should also equip them with the necessary skills to enable them to manage their own health effectively through life and prepare them for shared decision-making with healthcare professionals. Medicines education should become part of the National Healthy School Standard and could be delivered through the Personal Social Health Education & Citizenship element of the National Curriculum. It must be ensured that this is developed in a fully objective manner, covering the potential harms and benefits of medicines and their place in wider healthcare choices. Possible exploitation of this initiative for marketing opportunities must be resisted.
The Government should ensure that the communication skills of healthcare professionals are strengthened
The Government should take the lead in ensuring that healthcare professionals become better communicators. This should include the effective co-ordination of all healthcare professional education requirements relating to the communication of medicines information, including health informatics. Mutual accreditation schemes should be developed and agreed with relevant bodies. The profile of communication training needs should be significantly raised through university teaching and lifelong learning.
Improvements should be made to the existing patient information leaflets
The MCA should ensure that PILs contain clear, concise, meaningful and explanatory information. Confusing and complex statements should be removed, while the potential harms and benefits of taking the drug are made clear, in a non-alarming manner, using language appropriate to all patients. The order of information should be restructured, so that information relating to the condition comes first, and that which is less relevant to the consumer is at the foot. Different formats should be made available for people with learning and/or language difficulties and for those who find audio and/or visual formats easier to assimilate. New PILs should be compulsorily tested on patients for understanding, and only those achieving the gold standard should be passed – as is already the case in Australia.
Excellence in information provision should be promoted
All agencies must be encouraged to collect, and make public, examples of both good and bad health information practice, via a central body such as the NHS Information Authority, to inform and guide future good practice. 'Information brokers' should be established in primary care trusts (as recommended by the Picker Institute). The findings of this report should feed into the National Knowledge Service, a Government programme to deliver more integrated information and knowledge services to clinicians, managers, patients, the public and carers.
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