The Resourceful Patient

4.2 21st century healthcare organisations - patient-centred organisations

Healthcare organisations can help patients become more resourceful by:

  • giving patients resources
  • involving patients in the design and running of the service
  • developing systems that assume the patient is resourceful and delivering resources where and when they are needed
  • measuring and acting on the experience of patients
  • helping clinicians become more supportive

The enquiry into the events at Bristol Royal Infirmary led to a number of principles being proposed to increase public and patient empowerment. These principles, as set out in the Kennedy Report, are reproduced below.

  • Patients and the public are entitled to be involved wherever decisions are taken about care in the NHS
  • The involvement of patients and the public must be embedded in the structures of the NHS and permeate all aspects of healthcare
  • The public and patients should have access to relevant information
  • Healthcare professionals must be partners in the process of involving the public and patients
  • There must be honesty about the scope of the public's and patients' involvement, since some decisions cannot be made by the public
  • There must be transparency and openness in the procedures for involving the public and patients
  • The mechanisms for involvement should be evaluated for their effectiveness
  • The public and patients should have access to training and funding to allow them to participate fully
  • The public should be represented by a wide range of individuals and groups and not by particular 'patient groups'

In 2001, the Department of Health published a Discussion Document on 'Involving the Patients and Public in Healthcare.' A listening exercise was organised and more than a thousand people attended meetings and commented on the proposals. As a result, the Department published a Response to the Listening Exercise, which described changes to the initial proposals, and the Secretary of State endorsed these proposals when outlining his Department's response to the Bristol Report with initiatives such as

  • a Patient Advocacy and Liaison Service (PALS) for providing on the spot help for patients within primary care and hospital trusts
  • a Patient Forum for monitoring and reviewing services, and influencing and informing management decisions, in each primary care and hospital trust

These organisations will be co-ordinated regionally and given national leadership by a Commission for Patient and Public Involvement in Health, which will monitor and improve all these activities, with its authority based on the statutory duty, from the Health and Social Care Act, to consult and involve the public.

The private sector has always asserted that it is more sensitive to the needs of patients, and although this has focused on providing faster access and a better environment, they are now focusing on the provision of information. The homepage of BUPA, the largest private health service in the UK, now says that 'Informed patients recover faster' because 'patients who understand what is going on can experience less anxiety, less stress, and recover more quickly.' PPP Healthcare provides a service called Health at Hand which 'is ready for your call at any time of the day or night' so that members 'can get easy access to the best health related information.'

4.2.1 Giving resources to patients

The NHS is committed to giving patients:

  • electronic patient records to record episodes of care, and
  • electronic health records for their lifelong record of health and healthcare

In addition, healthcare organisations can ensure that:

  • their principles and systems are described on a clearly written Web site that conforms to the Bobby principles for disabled access
  • their care pathways are equally open to patients and clinicians
  • information is easily available about local services, and ways in which they may vary from nationally agreed guidelines
  • contracts between clinicians and patients are clear and unambiguous
  • patients are provided with high quality decision aids. A review of the evidence about decision aids shows that they are of benefit to hospitals and healthcare organisations because they have the effects shown in Table 12. (4)

However, patients should not only be seen as passive recipients of resources - they can be actively involved in the planning and management of care.

Table 11: Do decision aids work?
Evaluation studies from a Cochrane systematic overview
Decision aids improve decision-making by:
  • reducing the proportion of patients who are uncertain about what to choose
  • increasing patients' knowledge of the problem, options, and outcomes
  • creating realistic personal expectations (perceived probabilities) of outcomes
  • improving the agreement between choices and patients' values
  • reducing some elements of decisional conflict (feeling uncertain, uninformed, unclear about values, and unsupported in decision-making)
  • increasing participation in decision-making without adversely affecting anxiety

4.2.2 Involving patients for better care

Patients or their representatives can be involved:

  • on the Board of healthcare organisations
  • on patient participation groups working with clinicians to improve services
  • in the design of new facilities
  • in research projects

The involvement of patients in research is perhaps the most radical of these moves. It has been customary for research to be governed by ethics committees to ensure that patients are protected from poorly designed or harmful research projects. Interestingly, although research ethics is of great importance, there is some evidence that patients are safer and better cared for when they are involved in a research project, and therefore that ethical concern should focus not only on the researcher who wishes to test a hypothesis but also on the clinician or service manager who wishes to introduce new treatments or services. Hitherto, the latter groups had no controls at all placed on their behaviour when they wished to introduce a new treatment or service.

In the 1990s, patients began to be involved in the design and execution of research, not only to make the research more acceptable but to improve the relevance and usefulness of the research. The Cochrane Collaboration has made the involvement of patients central to its work since its inception, because the involvement of patients and carers ensures that the right questions are asked and the right conclusions are drawn from data. The Director of the UK Cochrane Centre has illustrated the benefits of this approach by pointing out that if women had been involved in the design of breast cancer treatment trials much earlier, the problem of radiation injury to the upper arm would have been identified much earlier because clinicians focused principally on cancer mortality as their outcome measure.

Guidelines were initially written by clinicians for clinicians but the North of England Evidence-Based Guideline Development Project explained four different ways of involving consumers, as set out below.

The four methods explored were:

  • incorporating individual patients in guideline development groups
  • a 'one off' meeting with patients
  • a series of workshops with patients
  • incorporating a consumer advocate in guideline development groups

The key messages were:

  • consumers should be involved in all the stages of guideline development to ensure their views are heard. Consumers (like all guideline development group members) need support to be able to understand the detail of the science behind the issues they will hear about and contribute to the discussion
  • having explored four different methods of involving consumers, none was ideal and, even if optimised, each alone would be likely to remain limited
  • given the greater degree of discussion within a 'one off' group of patients than by the sole patients within the guideline groups, it seems reasonable to at least offer consumers within guideline groups the option of being one of a pair
  • it is feasible to support consumers to understand the technical elements of guideline development. (5)

The message is clear. Patients should, and can, be involved in guideline development and the National Institute of Clinical Excellence does this.

4.2.3 Developing systems that deliver resources when and where they are needed

A system is a set of activities with a common set of objectives. Healthcare organisations deliver systems of care to diagnose and treat patients. There must also be systems that provide resources for patients when and where they are needed.

The classic example is the informed consent form, usually given as a paper document to a patient before an operation or procedure. However, digital television will soon be at every patient's bedside, paradoxically giving the patients better access to screens than clinicians. As well as letting the patient watch diverting films and shows, these screens could also be used to offer the patient about to undergo a procedure or operation:

  • background information about the procedure and what will happen
  • information about the probabilities of benefit and harm, including the ability to deliver this information to people of different reading age
  • videos of the experience of other individual patients who have undergone the same procedure or operation, through the DIPEX database

These resources can also reduce medical error, but when medical error occurs, it is important for the health service to be open and honest. The Secretary of State set out seven pledges for quality improvement in September 2001.

4.2.4 Measuring and acting on the patient's experience of care

The resourceful patient not only needs resources but acts as a resource for the intelligent clinician or manager. Patient satisfaction is largely determined by their expectation; patients can be satisfied with very poor quality care if expectations are low. Because of the weakness of patient satisfaction as a measure of service quality, important though it is, the Picker Institute, founded in the US and now active in Europe, developed systematic methods for measuring the patient's experience of the care they received. The Picker survey asks questions not only about the hospital environment but also about communication and clinical decision making (Box 1).

Examples of questions on the Picker Institute Patient Survey
G3 Beforehand, did a member of staff explain the risks and benefits of the operation or procedure in a way you could understand?
G4 Beforehand, did a member of staff answer your questions about the operation or procedure in a way you could understand?
H5 Did a doctor explain the purpose of the medicines you were to take at home in a way you could understand?

For example, rather than asking people if they were satisfied with the amount of information given, they were asked to recollect what information had been given. If the patient could not recollect any information, that fact is important to the healthcare organisation, whether or not the clinician thought that the information had been transmitted, and whether or not the patient was satisfied with the amount of information they received. The measurement of the experience provides a direct measure of service quality and patients are resources of great value to those who provide or pay for healthcare.

4.2.5 Screening programmes now assume that people are resourceful

The word 'screen' originally meant a sieve - something used for sifting coal or grain, but in the last hundred years the meaning of the word has changed, and it now signifies something that is solid and impervious, a screen in a cinema or the folded screen in the corner of a room, over which, in a stage farce, clothing can be tantalisingly draped while the naked person is kept perfectly hidden. In medical screening, the original meaning of the word is much more appropriate, for two reasons;

  • no screening programme is able to detect all the cases of disease in a population, and
  • every screening programme classifies some people with a positive diagnosis when they do not have the disease

This is analogous to a sieve used for sifting grain. The objective of this sieve is to let through dust, small stones and chaff whilst retaining the grain, but in practice:

  • some grain falls through the holes in the sieve, and
  • some stones and chaff are retained in the sieve

Of course it is possible to construct the perfect sieve, but

  • if the holes are made so small that not a single drop of grain will fall through, lots of dust, dirt and chaff will be retained inside the sieve
  • if the holes are made big enough for every bit of dust, dirt and chaff to fall out of the sieve, lots of grain will drop through to the ground

Every screening programme, therefore, has

  • false positives: people who are told they have the disease but who do not actually have it, and
  • false negatives: people for whom the screening test is negative but who do actually have the disease

It is impossible to have a screening programme with no false negatives and no false positives. Disillusionment with screening

There was great confidence in screening when medical hubris was at its height. It seemed obvious that to find disease early would result in better outcomes, but this is not always true. There are many reasons for this. One reason is that some cancers may have spread at a very early stage, which makes even early detection through screening ineffective in increasing the probability of cure. Screening created an image of 100% perfection, but the systematic measurement of error demonstrated by the quality assurance systems developed for screening programmes has shown that this is not the case, leading to disillusionment with screening. However, this disillusionment is not so much with the screening process itself, because people offered screening can very quickly appreciate the fact that screening programme cannot be 100% sensitive and specific. But what they feel is that they have been misled. The drive to maximise coverage

Before health care planners took the views of patients and the public seriously, they took a utilitarian and businesslike approach to screening. They saw screening as offering potential benefits for some of the individuals screened, and for the population as a whole. Healthcare planners sought to encourage people to attend for screening, and to motivate healthcare professionals to increase their enthusiasm to persuade people to attend for screening. General practitioners, for example, were paid depending upon the proportion of their population that had had a cervical smear, leading one woman to complain that 'I have had four letters asking me to go for cervical screening. When will they ever learn that I do not want to go?' It is certainly appropriate to point out the potential benefits of screening to people, but what screening programmes did not point out, until recently, were the inherent problems in screening, in that:

  • all screening programmes do harm to some people
  • some of the people who are harmed do not have the disease for which they are screened

In clinical practice clinicians offer treatment, and patients know that there is a probability of harm; not perhaps as well as they should know, but the contract between clinician and patient is still clear. In screening, however, some of the people screened will have a false positive result, and they will be harmed as a result of the investigations that are offered to them, from which they stand no possibility of gaining benefit because they do not have the disease. For example, in screening for colorectal cancer, the initial screening test for blood in the faeces is simple and harmless. However, those who test positive have a colonoscopy, a procedure which is not without risk, resulting as it can in perforation of the colon, which can lead to peritonitis, and even to death. This series of events could occur in some people who do not have the disease, and for this reason screening, more than any service, needs to treat all those who undergo it as intelligent adults.

The national breast and cervical screening programmes were the first to identify the need to:

  • emphasise that screening did not detect all cancers
  • emphasise that screening was potentially harmful
  • offer informed choice

In a research project designed to help the national breast cancer screening programme provide clear information, it was proposed that all women be offered clear and accurate information about the risks and limitations of screening.

Table 12: Advantages and disadvantages of screening
Potential benefits and difficulties of breast screening
  • Most breast cancers are found at an early stage when there is a good chance of a successful recovery
  • Around half the cancers found at screening are still small enough to allow breast saving surgery
  • Breast screening is estimated to save about 1,250 lives per year in the UK
  • Breast screening reduces the risk of dying from breast cancer in the women who attend
  • Some women will be recalled for further investigations because of uncertainties over their mammogram. Following further tests, many of these will prove not to have cancer. Being recalled can cause unnecessary worry
  • Some breast cancers present will be missed by screening
  • Not all breast cancers found at screening can be cured
  • Many women find mammography painful albeit for a brief period of time

This approach has been taken in other screening programmes. Antenatal screening is obviously an area in which open and complete information is absolutely essential, partly because one of the outcomes in antenatal screening is abortion. It is therefore essential to tell women about the possible consequences of a blood test before that test is taken.

The National Screening Committee in the United Kingdom has proposed that screening be renamed as 'risk reduction' to try to emphasise the fact that it is not 100% sensitive or specific. The committee also introduced the concept of 'informed choice' for all screening programmes and argued that if health care professionals are to be paid, this should not be based on the proportion of the population that has been persuaded to have a test but on the proportion of the population that feels that it has been empowered to make an informed choice. The National Screening Committee organised a workshop on informed choice in screening which examined this concept, and ways in which it could be introduced in different types of screening programmes. The workshop recognised that there was a conflict between giving information to encourage uptake and giving information which might lead to the person invited to be screened not accepting the offer, which could reduce both the uptake and cost effectiveness of screening programmes. In a paper addressing the ethics of informed choice, the author emphasised the need to respect the principle of autonomy, particularly in screening programmes. The way to do this was by encouraging a new style of consultation in which the consideration of choice was regarded as its most important function, whatever the choice made at the end of that consultation. (6) Where screening leads, other services will follow

Because screening services deal with healthy people, and can cause harm to them, the moral responsibility of those involved in the management and delivery of screening is generally considered to be greater than that of clinical practice. However, many of the principles that have been developed in the screening programme are equally relevant to clinical practice, and there appears to be no qualitative difference between the two types of health service. As a result, there is no good reason why the principles and practices developed in screening should not be applied throughout all of healthcare. Making offers to punters

'Well, Dr Gray, we have had a long discussion about whether we should call people patients or clients. "Patients" is not a very good word for people invited for screening but neither is "clients". The best thing would be to call them "punters" because, let's face it, Dr Gray, they are taking a chance every time they walk into the service.'

This doctor's remark, intended to be flippant, made at a meeting considering what people offered screening should be called, was received with great enthusiasm by professional colleagues because the word "punter", in the United Kingdom at least, is used to describe someone who is taking a gamble. The person who is the punter needs to know not simply about whether there is evidence about the effectiveness of cervical screening but about the relevance of cervical screening to them as an individual. The punter's age is of significance and in a paper in the Journal of the American Medical Association, the changing relevance of the age factor in screening for cervical, breast and colorectal cancer was considered. Screening has a probability of benefit for each individual and a probability of harm, and depending upon the individual's age, and certain other health factors, the probability of benefit and the probability of harm vary. The authors of the paper present two different case studies outlined below.

Case 1. Mrs A is a 75-year-old white woman with diabetes, severe dementia, and functional dependency in all activities of daily living. She lives with her daughter and has no prior history of any cancer screening tests.

Case 2. Miss B is an 80-year-old white woman who is widowed, living with her sister. She has no comorbid conditions, walks 3 miles a day, and cooks and cleans for her older sister. She has no prior history of any cancer screening tests.

Having presented a lot of data about the probability of dying, the probability of benefit and the probability of harm, the authors relate this method to the two cases.

'Mrs A has avoided physicians all her life and does not like undergoing tests'. On the other hand, 'Miss B reveals that she worries about her health and wants to have a mammogram, a pap smear and a faecal occult blood test for colonic cancer'. The decision is therefore to recommend that Mrs A should not be given a screening test but that Miss B should be given a screening test even if her probability of benefit is relatively low. (7) In an accompanying editorial (8) the author, who is an influential physician, not only reflects on the article but also tells how he had just spent time with his 80-year-old mother who had asked him to write down all the relevant information about the treatment of narrowing of the carotid arteries, which can include radical surgery. Having reflected on his experience in the article, the author of the editorial states that he 'cannot imagine trying to communicate all these ideas to my mother, or any other patient, in a fifteen minute visit. Because screening has been so effectively promoted as a uniform good, these ideas may be seen as heretical to most.' He does, however, emphasise that educational efforts formerly focused on persuading people to be screened, have had to focus on the trade-offs, and although screening is beneficial for populations, it is for many patients what the Americans call 'a close call'.

4.2.6 21st century healthcare industries - advertising medicines

In giving patients full information about their medicines, pharmaceutical companies are required to produce descriptions of the drugs they produce and to make this information available to patients. This is usually done by printing information on a small sheet of paper, in small or very small type, necessarily so because the printing of the information in the type size and spacing of this book produces a sheet of paper that would require a pillbox to be much larger than it is at present. The Association of British Pharmaceutical Industries, the ABPI, is keen to give patients full access to information and has a working party on the informed patient which is promoting better and fuller information for patients.

If medicines are legal, as they are, and if patients are intelligent, as they are, the ban on advertising medicines is difficult to sustain. In the United States medicines can be advertised and the distinction between advertising and informing, or between promotion and information, which may be difficult to discern in Europe, is now clearly different in America, where drugs can be advertised to patients, with the advertisers using the same powerful overt and covert messages as they use for other products.

In Europe there is opposition to the advertising of medicines, in part because it is thought that this will increase the demand for medicines. Most governments are keen for the pharmaceutical industry to provide high quality information to the patient once the decision to prescribe has been made, but wish to shield the patient from intensive advertising before the decision is made as to whether or not to prescribe medicine, or the decision is made as to which particular medicine should be chosen.

The strict adherence of the pharmaceutical industry to these guidelines is praiseworthy but their usefulness was called into question by the dramatic sales figures for Viagra, which was not provided by the NHS or most other healthcare providers in Europe, but which was obtained in large amounts by ageing males. There was no need for the drug company to advertise - the Internet did the job, and more patients will gain the information about their medicines from drug companies on the Web - and it is right that they should do so - once the decision has been made about which medicine they should have.

Drug companies are now doing even more - for example, Pfizer, in an advertisement in The British Medical Journal, now advertises to inform the journal's readers (doctors) that their publication, Your Heart is 'mailed directly to patients' homes; Your Heart is a unique educational programme for patients starting treatment with Istinä, Cardura ä, Lipitor ä', and this includes 'a workbook, personal action plan, monthly fact sheets and newsletters to encourage patient responsibility.'

The Association of the British Pharmaceutical Industry commissioned a report on The Expert Patient to inform their project called 'The Informed Patient Initiative', and the report, which proposed a new 'Patients' Code', concluded that:

The most important thing is to recognise that different patients have different needs - and that the same patients may have different needs at different times in their lives.

There is no one right way. Some patients will want to establish a 'sharing partnership' with their doctors in which they weigh up the options and decide together what to do for the best. Others may feel this is inappropriate if the doctor is under pressure to rein in prescribing costs, arguing that a partnership involves sharing in equal measure, and that the doctor-patient relationship is by definition unequal. Some will continue to opt for the paternalistic model. Each of these models had a valid place in the overall scheme of things. But the development of the expert patient is an unstoppable trend.

Another new type of service is called LinkMedica.which is of interest not only because it is funded by a drug company, AstraZenica, but also because it offers a completely new way of helping doctors and patients work together to achieve better control of asthma. The online service provided through LinkMedica would allow a patient with asthma to:

  • monitor their asthma over the Internet or by telephone daily
  • obtain immediate feedback on how she is managing her asthma
  • share the daily information with her doctor or nurse
  • obtain current pollen and pollution counts for the part of the country in which they live

All of it is backed by a knowledge centre, which clearly distinguishes between 'evidence-based content' and 'news', with the evidence-based content being written reports of findings from 'the best available clinical research,' and these are made equally open to health professionals and patients.

The service offers an electronic asthma diary, which allows the patient to record her symptoms and certain physiological signs. When this information is fed to the Asthma Management Centre, the patient receives electronically, a clear signal, either green, yellow, orange or red, about the action she needs to take to avoid an acute episode, which often results in hospitalisation. The site is justified by a piece of evidence-based content, namely a review of 22 clinical trials which compared people who were treated for asthma in the usual manner with those who had learned self-management techniques, and this review showed that structured self-management reduced hospital admissions and time off from work or school. LinkMedica demonstrates, however, that self management can be supported through the Internet, allowing new patterns of care to evolve.

4.2.7 Helping clinicians become supportive

One of the most important functions the healthcare organisation can undertake is to support those clinicians who deliver care directly to patients, and who will have to evolve quickly and dramatically to adapt to resourceful patients.