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Keywords:

  • patient empowerment;
  • patient satisfaction;
  • shared decision-making

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

ObjectiveTo give an overview of the value of different interventions for increasing the role of individual patients in improving the quality of care provision.

Search strategyMedline searches and manual searches in medical journals covering the period from 1980 until June 1997.

Inclusion criteriaStudies reporting descriptions and evaluations of seven types of interventions that aim to help integrate the needs and preferences of individual patients into health care provision.

Data extractionThe following information was extracted: assumptions underlying the interventions; resources needed for development and implementation; and acceptability to clinicians.

Main resultsSeveral interventions for increasing patients' roles in health care could be successful in clinical practice, such as feeding forward patient data to clinicians, interactive patient education and feedback to health care providers about patients' evaluations of care. The available research focuses on feedback methods. Insights into the benefits and limitations of the use of the different interventions for improving care are limited.

ConclusionThe active role that patients' views play in the contact with a care provider is often neglected. Promising interventions for the empowerment of individual patients require further development and evaluation.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Increasing patients' roles in care provision is an important new approach to the improvement of the quality of health care. At a societal level, this may involve, for example, enshrining patients' rights to information about treatment options in law, and improving the representation of patients in health policy fora. This paper, however, focuses on individual patients and their clinicians during episodes of care: health care in its most visible and concrete form. At this level empowering patients may mean, for instance, improving opportunities to choose a care provider, increasing patient influence during consultations, supporting more active involvement for patients in the selection of medical treatments, and creating better opportunities for patients to provide feedback on care received. Although the term patient may be inappropriate for some people with health problems, it is still the term that is most often used to describe individual users of health care and we stick to that convention in this paper.

Increasing patients' roles in health care could affect the quality of care in a number of ways. Firstly, for example, it may lead to patients' views being better articulated and clinicians being more responsive to patients' needs and preferences (it is unclear whether this implies a reduction of professional autonomy). Secondly, patients may be able to support the implementation of guidelines and research evidence,1 which is currently sought mainly by interventions directed at clinicians.2, 3 Patients can be seen as co-producers of health care, because their decisions and behaviour influence health care provision and its outcomes.4 Patients' influences on care, however, may not necessarily all be positive: patients may demand medical care that is inappropriate and may threaten their health status. Finally, it has been suggested that patient empowerment could, by influencing demand for health care, promote cost-containment and improve efficiency,5 although health care that is driven by patients' demands might also prove to be more expensive.

A crucial component of patient empowerment is that patient's views on health and health care are better taken into account. Individual patients hold diverse views, which may change over time. Figure 1 provides an overview of different opportunities for strengthening patients' role in the process of health care provision. A care episode usually begins with a perceived health problem and a reduction in quality of life. At this stage the patient may have specific preferences about care provision. In this initial phase, patient empowerment involves activities that help the patient to chose a care provider and prepare the patient and the clinician for a consultation. In the next phase – consultation with a clinician – patient empowerment refers to activities that support the identification of patients' needs and preferences and the provision of information to patients. After the consultation, patients' influence can be improved by providing feedback on patients' evaluations of care to care providers.

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Figure 1. Model for patient involvement.

This paper describes and evaluates seven types of interventions that aim to increase the influence of individual patients on care provision. Rather than discussing each intervention in detail, we aim to evaluate the different types of intervention from a practical point of view. Thus we focus on the effects of the interventions on health care and the feasibility of using them in daily practice. In the discussion, we identify potentially useful interventions and areas requiring further research.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

This paper is based on extensive literature searches that were performed for earlier studies and reviews in the areas of quality improvement6, 7 and patient participation in health care.8 These included searches using Medline (January 1966 – June 1997) and manual searches of 27 medical journals (January 1980 – June 1997). In addition, for this paper, recent volumes (January 1996 – June 1997) of about 50 medical journals were scanned manually. We have used empirical studies where possible, but it is beyond the scope of the paper to provide a comprehensive review of the research evidence on each of the interventions. Comprehensive reviews are made difficult because of the lack of adequate search terms.

Papers were considered for inclusion if they referred to an intervention that aimed to help ensure that the needs and preferences of individual patients were integrated into the health care provision process. Seven types of intervention were identified: provision of information about health care providers' performance, feeding forward of patient data to clinicians, preparation for shared decision-making, identification of patients' needs and preferences, interactive patient education, feedback to clinicians about patients' evaluations of care, and feedback on patients' comments and complaints. We excluded (a) traditional, non-interactive types of patient education on health and diseases, because they do not allow patients' input, (b) interventions that involved clinicians or managers taking the perspective of the patient,9 (c) the provision of financial incentives such as co-payment methods or patient caps to health care providers, because there is no identification of patients' views implied, and (d) interventions that aimed to increase patients' self-management of their medical condition after the consultation with a clinician. We included all controlled trials that referred to one of the seven intervention types. Other papers, for example those reporting survey research or non-empirical viewpoints, were included if they provided a valuable contribution.

In the results section we describe each of the intervention types and provide two or three illustrative examples. A short assessment based on data extracted from the papers summarizes: reasons why the intervention might potentially improve care and the assumptions underlying these; research evidence about its effects (we focused on controlled trials only when reporting effects); the resources required to develop the intervention and implement it in daily practice; and its potential acceptability to clinicians.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Table 1 gives a summary of the assessments.

Table 1.  Overview of approaches Thumbnail image of

Decisions about care providers

Provision of information about care providers' performance

The ability to choose a care provider is probably the most fundamental power of a patient. Patients can use their potential to switch to a different care provider to influence the process of care provision even if they do not actually go on to move to a new provider. Interventions to help patients make better decisions about their care providers often involve providing information about the quality, cost and outcomes of care achieved by different providers.

One example of this type of intervention is the report card. Report cards contain information from a variety of data sources, including audits of hospital records, electronic databases and patient satisfaction surveys. They are now widely used in the United States where patients can chose between many competing managed care organizations.

These interventions are usually based on several assumptions. Firstly, that patients are willing and able to make rational choices between different health care providers or health care plans. Secondly, that patients are the best judges of their interests when it comes to health and health care. And thirdly, that patients will make rational choices about health care providers that will result in the best possible care and outcomes being obtained for the lowest possible costs.

A survey of obstetric care providers in Missouri suggested that the use of report cards resulted in a broader range of services being offered, changes in the rates of particular technical procedures and higher levels of patient satisfaction with care.10 A cross-sectional survey among patients showed that the ability to choose a personal physician was associated with higher satisfaction with care.11 On the other hand, it has been observed that patients do not always behave as rational consumers. The circumstances in which patients first seek a health care provider may not be conductive to choice, and subsequently people may not know, or may lack the motivation to exercise choice and change providers.12[13]–14 Data from family health services authorities in the UK showed that the volume of movements of patients between general practices was very small.15

Focus group interviews have suggested that the information provided on report cards may be difficult for patients to understand and may not be relevant for the decisions they face.16, 17 Patients who do want evidence on which to base their decisions may not know how to find the information they require.18 The information that is available may be based on old data, and variations in patient case-mix may not be accounted for adequately.19 Information from different care providers may not be comparable. Finally, consumer choice is only meaningful if there is a range of accessible alternatives, such as in a competitive health care market. It has been suggested that, in the UK at least, it is easier for patients to choose between general practitioners than between hospitals because they have more experience of general practice care.20 Nevertheless, in rural or remote areas there may be few practices to choose from.12

The costs of producing information about health care providers are considerable. Details of exact development costs are lacking but data-extraction from one medical record cost about 16 US$ in the early 1990s.19 The dissemination of information about health care providers via journals and reports carries relatively low costs.

Literature on the acceptability of this method to clinicians was not identified, but it can be assumed that many feel uneasy about it, because they feel that it threatens their professional autonomy and the quality of medical care (personal communication Prof. Richard Roberts, University of Wisconsin, USA).

Preparation for consultations

Feeding forward of patient data to clinicians

Attempts to better prepare clinicians for encounters with patients include interventions that involve documenting patients' clinical symptoms, quality of life and health care needs and feeding them forward to clinicians before they meet with the patients concerned. These interventions might aim to improve screening for unknown health problems,21 promote uptake of preventive interventions,22 or help clinicians to better manage identified conditions.23, 24

An example of an intervention that aims to improve screening is a questionnaire about mental health symptoms that is filled in by the patient shortly before a visit to a primary care physician and attached to the front of the patients' chart prior to the medical examination.21 An example of an intervention that aims to improve preventive care is a questionnaire about preventive care that is given to patients who are waiting to see their physician. Patients are told to give a carbon copy to their doctors and advised to discuss incomplete preventive care with them.22 These interventions might be used at an aggregated, as well as an individual level. For example, questionnaires might be mailed out to all elderly patients registered at a particular practice.25

An example of an intervention to feed forward data from diagnosed patients is a diabetes care feedback form with several components. It identifies the diabetes self-management issue or question that the patient would most like to discuss at the visit, and provides summary information about the patients' dietary intake and their reported barriers to dietary adherence. It also uses a visual analogue scale to indicate the patient's readiness to engage in dietary change, their perceptions of the seriousness of diabetes and the importance of diabetes management, and their desire for participation in diabetes management decisions.24

These interventions are based on the assumption that clinicians lack crucial information about patients and that they are willing to use such information if it is provided in a timely fashion before the consultation. Controlled trials have shown that feeding forward of patient data can increase clinicians' recognition of patients' health problems and needs for care21, 22 and patients' satisfaction with care provided.25 The effects of these interventions on the technical quality of care and health outcomes are unknown and may be limited.25 The effects may depend on the type of patient data given to clinicians. For example, data on clinical symptoms may be more effective than data on reported needs for care.

Interventions that feed forward patient data require adequate data collection instruments such as questionnaires or scoring lists. These should be short and easy to use, but sensitive enough to detect important health needs. The costs of developing these data collection instruments can be considerable. The costs of using the interventions in clinical practice depend on the precise procedures involved. For example, costs are high if an interviewer is used to collect patient data but lower if written questionnaires are used. The costs of handling the data and then reporting to clinicians also need to be considered. Computer support could reduce some of the costs of these interventions.

Interventions involving the feeding forward of patient data will probably be highly acceptable to clinicians if the types of data provided are perceived as relevant for clinical care.

Preparation for shared decision-making

Some interventions aim to clarify patients' needs for care and increase patients' involvement in decisions about their care. Several of these interventions involve patients participating in some form of briefing meeting before they consult with a doctor. One example is a 20-minute educational session with an assistant26, 27 during which patients' medical charts are reviewed using an algorithm to identify relevant medical decisions. Patients are encouraged to ask questions and negotiate decisions with physicians. They are also taught techniques for overcoming barriers to involvement such as embarrassment or appearing foolish. Another example is a 5-minute session with a nurse during which risk factors are discussed and the patient's worries and needs for information are clarified.28

These interventions to prepare patients for shared decision-making are based on the assumption that patients want to be involved in decision-making and that this involvement results in better health care outcomes. They also assume that short preparation sessions can help to improve patients' involvement. A systematic review of studies on patients' priorities concerning general practice care shows that most patients feel that involvement in decision-making is very important for them.29 On the other hand, it has been suggested that some patients will not want to take responsibility for decisions that might result in negative outcomes, particularly if they are seriously ill.30

The effects of patients' involvement in decision-making on health outcomes are mixed. Controlled trials suggest that actual participation in the consultation (assessed from audio- or videotapes of consultations) has different effects than perceived participation (assessed by patient report). Actual participation may help to reduce patients' anxiety,31 increase patients' decision responsibility after the consultation,30 and improve health status.26, 27, 32, 33 Perceived participation in the consultation is less consistently related to health care outcomes.30, 31, 34, 35 For instance, in one study participation was associated with reduced anxiety only among patients educated to a higherlevel.31 In another study, participation was not related to better quality of life.30

The feasibility of interventions to prepare patients for shared decision making is unclear. The duration of consultations may not be longer after preparation of patients,26 but patients themselves have to allow time for the preparatory session. The costs of using a trained person to provide the preparatory session include the development costs of training the trainer and ongoing labour costs. It is unclear to what extent these interventions are acceptable to clinicians.

Contact with the clinician

Identification of patients' needs and preferences

The identification of patients' needs and preferences is an important part of a consultation,36 and a number of interventions have been developed to help identify patients' preferences for particular treatments.37 Most of these take a formal model of decision analysis to be normative. For example, interview schemes have been developed that include information about treatment alternatives and their potential outcomes, and the probability of these outcomes occurring. Individual patients are asked to value the different outcomes, using a procedure developed for the purpose, such as a standard gamble technique. The patient's values are then incorporated into a formal decision analysis calculation.

These interventions assume that evidence on the probability of outcomes of different treatment alternatives is available. They have been criticized because there are a number of potential problems with the measurement of patient preferences. An individual patient's preferences may vary according to the way in which information about options is presented to them, and may be unduly influenced by recent experience.36 Patients may find it difficult to value outcomes they have never experienced, and they do not always make rational choices in real life.38, 39 The components of a formal decision-support system may not be sufficiently specific to capture the concerns of individual patients.37

Insight into the effects of these methods is limited. Very few well-designed studies have been conducted in this field so far. Cross-sectional studies suggest that clinicians' attempts to elicit patients' preferences may be associated with better outcomes, but further research is necessary to assess this.36

Interventions to identify patients' preferences can be expensive. Interviewers are usually required because the techniques for eliciting preferences can be difficult. The use of computerized interview techniques could be an important development.40 Attempts have been made to limit the amount of information required to estimate patients' preferences accurately41 and it could be more cost-effective to use these interventions than to apply a uniform clinical guideline.42

Some clinicians may be sceptical about the potential for identifying patients' preferences,38,39 referring to the problems mentioned above. Nevertheless, interventions to identify patients' preferences may be particularly desirable in some situations.43

Interactive patient education

Educating patients about their clinical problem and its management is a component of many doctor-patient contacts. Patient education can be oral, but may also use written or visual aids such as leaflets and demonstration models. Several interventions have been developed to increase patients' active involvement in educational activities, either during or after consultations. For example, a relatively simple example of a visual risk table can be used in a consultation to help discuss the prevention of cardiovascular diseases. Another example is a 20-minute educational session with a trained nurse that takes place after a patient has presented with low back pain.44 The nurse will answer the patient's questions and help to set exercise goals. This session is then followed-up 3 days later with a telephone call. A third example is an evidence-based interactive video programme that provides patient-specific information on specific diseases and medical procedures after the patient had entered details of their age, sex and symptom status into a computer.45, 46 The patient can decide how much information he or she wants to see using a `learn more' option.

All educational approaches assume that information guides behaviour, and that if the patient has a better understanding of their options they will, for example, comply more effectively with treatment regimens, adopt healthier lifestyles or adhere to professional guidelines. Criteria have been developed to assess the quality of information intended to promote involvement in decision-making. Examples of question asked to determine such criteria are `is the information known to be of interest to patients?' and `have users and professionals been involved in the development and evaluation of the materials?' Although patient education can help to improve patient care, empirical evidence of the relevance of such quality criteria for the effects of education is limited.47

The costs of developing educational packages to inform patients can be high, and a considerable investment may be necessary to develop materials for one specific condition.46 The costs of using the packages vary. Leaflets may be quite cheap, but individual instruction requires a trained person, and computer programs require expensive equipment4 5 If these interventions result in longer consultations or more medical procedures being carried out, additional costs may be incurred, but insight into this is limited.

Patients have evaluated interactive educational materials positively,44, 45, 48, 49 however, clinicians may be more sceptical. Some developers of patient education materials suggest that this scepticism may disappear when clinicians experience improved patient satisfaction and become aware that the intervention can help them work more efficiently.45

Feedback on health care provision

Patients' evaluations of care

After the consultation with a clinician or an episode of care, patients can look back at the health care they received. Feedback about patients' evaluations, or satisfaction with, care is usually given to clinicians on an aggregated level. For example data from surveys of patients who visited particular clinicians were analysed and feedback reports comprising the evaluations of their own patients and comparative data from similar surveys in other settings were prepared for each clinician.50 In another example, monthly surveys of a few patients in a specific out-patient clinic were used to make longitudinal reports of patients' views of the care provided.51, 52

The literature on patient satisfaction is extensive and highlights a range of conceptual and methodological problems.53 For example, determinants of patients' evaluations are not fully understood. Expectations and needs are probably relevant, but it is not clear what their exact influence is. The question of which features of␣clinicians' behaviour influence patients' evaluations of care has not been systematically investigated. In a qualitative study, patients interviewed immediately after they visited their general practitioner mentioned task-orientated behaviours (information giving, asking questions) to explain their evaluation of task orientated behaviours. However, they mentioned both task-orientated behaviours and affective behaviours (socio-emotional actions, partnership building) to explain their evaluations of affective behaviours.54

The effectiveness of feedback based on patient surveys has rarely been evaluated. Patients' evaluations of care are often not specific enough to induce immediate action: reflection and analysis of the determinants of patients' views are usually required. Some studies provide anecdotal or circumstantial evidence of the value of patient surveys. For example, a survey of physicians found that their assessments of patients' satisfaction were inaccurate,55 suggesting these could not replace surveys of patients.

Patient evaluation and satisfaction questionnaires consume patients' time. There are also costs associated with the production and distribution of questionnaires, and with data processing and the preparation of reports for clinicians. Studies of the actual costs incurred are rare. An exception is a study by Hearnshaw and colleagues in the United Kingdom, who estimated that the total costs of performing a survey ranged from zero to over £2200 per practice.56 They also found that home-made questionnaires tended to be more expensive to use than standardized questionnaires.

The literature suggests that feedback of patients' evaluations of care may not be seen as an acceptable intervention for improvements in quality by clinicians, who may experience scepticism, fear and lack of interest.57 A survey of a random sample of 120 Dutch general practitioners in 1993 found that only 24% saw surveys of patients' views as useful and only 1% had considerable experience of them.58 Patient satisfaction surveys may be more acceptable in competitive health care systems, where patient satisfaction determines maintenance of the health care institution.9

Patients' comments and complaints

Patients' complaints are negative evaluations of health care provision. Most complaints go unnoticed, but some are expressed and handled by formal or informal complaint procedures. Formal procedures include the use of legislation and the courts. The health professions have also set up formal bodies to handle patients' complaints and can take sanctions against clinicians.59 These bodies work more or less as legal courts, which they partly replace as a consequence of the principle of professional self-regulation. Many health care institutions have created more informal opportunities to handle patients' complaints. For instance, a primary health centre in the United Kingdom set up an informal complaints procedure, where patients could express their complaints to a patient liaison worker. In its first year 39 complaints were received.60 Another approach involves collecting the comments and complaints that are expressed in open questions in patient satisfaction surveys, letters or conversations with patients. These comments are collected and analysed to identify recurring themes.51

There are some serious problems with the use of patients' complaints for quality improvement. A retrospective review of physician malpractice claim records showed that most cases of physician negligence did not result in explicit complaints or malpractice suits,61, 62 possibly because complaints procedures were not widely known about. The same study also showed that not all complaints indicated physician negligence; that patients' complaints covered many clinicians, making it difficult to predict which clinicians are prone to complaints and target quality improvement interventions on them; and that many complaints are about bad communication, rather than technical performance. Other studies have shown that poor communication after an incident is an important reason why patients take further steps and express complaints.59, 63 Although it is possible that complaint procedures help to improve both technical and interpersonal aspects of patient care, evidence of their effectiveness was not identified.

The costs of medical liability are considerable: in the USA they comprise 15% of total expenditure on physicians' services.64 Informal complaint procedures probably have lower costs and they may be more acceptable to professionals. Empirical studies of the costs of running informal complaints procedures were not identified. While clinicians probably accept that colleagues who perform poorly should be sanctioned, many physicians in the United States feel that malpractice litigation induces too many complaints from patients.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Several interesting interventions methods have been developed in the last decade that aim to increase patients' role in health care. Some of these methods could be successful in clinical practice. The most promising seem to be feeding forward of patient data to care providers, interactive patient education and the provision of feedback on patients' evaluations of care. However, research evidence about the benefits and limitations of most methods is currently limited. This is even true for areas such as patient education and patient satisfaction where many evaluative studies have been performed, because the studies rarely analysed the effects of interventions on the quality of care or examined facilitators and barriers to their implementation.

Although the identification of patients' needs and preferences is seen as important in the medical literature,65, 66 research has shown that patients' needs are not always assessed adequately by care providers.67[68]–69 The literature on using patients' views for quality improvement focuses mostly on feedback of these views to clinicians, neglecting the active role that patients' views may play during in the contact with a care provider.70[71]–72

Like other interventions in health care, interventions to increase patients' role in care provision should be evaluated before they are implemented on a wide scale. The potential effects of the interventions on the quality and outcomes of health care must be known. These effects may be positive, for example an increase in the patient-centredness of care or an improvement in the implementation of a clinical guideline. They may also be negative, for example if inappropriate or superfluous care is delivered as a result of patients' demands, which may lead to an unnecessary fixation on somatic symptoms and more psychiatric complaints.73 Relevant outcome measures for these interventions include care providers' adherence to clinical guidelines, patients' illness behaviour (drug consumption, compliance with advice) and satisfaction with medical care.

It is important to determine the costs (financial costs and the unpaid time of patients and clinicians) and feasibility of an intervention in daily practice. Barriers and facilitators for implementation should be identified if widespread use of the intervention is planned. Some of the interventions for increasing patients' roles in health care are costly and of limited acceptability to clinicians. This demands further analysis, because there might be opportunities to reduce the costs and improve the acceptability of these interventions. The acceptability of methods to patients should also be evaluated. Only if effective and feasible interventions are developed and implemented will patient empowerment become a reality for individual patients and their clinicians rather than just a popular theme in the health care debate.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

The authors thank Dr Heather Palmer for her contribution to this paper.

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  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
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