Where are the patients in decision-making about their own care?

    Publication year: 2008

    The policy issue:

    patient engagementOccasionally, all citizens have to make important health decisions that affecthealth outcomes. Strategies to support patient education and engagementshould therefore be a fundamental plank of health policy. Also, patients canplay an important role in understanding the causes of illness, protecting theirhealth and taking appropriate action, choosing appropriate treatments foracute episodes of ill health, and managing chronic illness. These roles must berecognized and supported.Policy optionsStrategies for promoting an active role for patients should pay attention tohealth literacy, shared decision-making and self-management.A number of interventions have been shown to be effective in building healthliteracy, promoting patient involvement in treatment decisions and educatingpatients to play an active role in self-management of chronic conditions.

    Theseinterventions include:

    • written information that supplements clinical consultations• web sites and other electronic information sources• personalized computer-based information and virtual support• training for health professionals in communication skills• coaching and question prompts for patients• decision aids for patients• self-management education programmes.ImplementationGovernments, health authorities or payers looking for ways to inform andempower patients need to agree about clear goals and a coherent strategy,with actions targeted at the national, regional and organizational levels.Patients as decision-makersExecutive summaryThe policy issue: patient engagementPatients can play a distinct role in protecting their health, choosing appropriatetreatments for episodes of ill health and managing chronic disease.Considerable evidence suggests that patient engagement can improve theirexperience and satisfaction and also can be effective clinically and economically.This policy brief outlines what the research evidence tells us about the effects ofengaging patients in their clinical care, and it reviews policy interventions thathave been (or could be) implemented in different health care systems acrossEurope. In particular, it focuses on strategies to improve:• health literacy• treatment decision-making• self-management of chronic conditions.Policy interventionsImproving health literacyHealth literacy involves the ability to read, understand, evaluate and use healthinformation to make appropriate decisions about health and health care. Lowhealth literacy is associated with health inequalities, and people with low healthliteracy tend to have poorer health and a greater risk of hospitalization.

    Healthliteracy interventions have three key objectives:

    to provide information andeducation, to encourage appropriate and effective use of health care resourcesand to tackle health inequalities.Health literacy interventions take a number of forms that have different merits.Written health information tailored to an individual's needs can be helpful inreinforcing professionals' explanations of health problems. Computer-basedinformation may be more effective than paper-based information, as it can bemore easily tailored to needs. Interactive television, audio tapes and web-basedinterventions have mixed results for improving knowledge, but can havebeneficial effects on patients' confidence and ability to be involved in decisions.They may also improve clinical outcomes and health behaviour.Information and education addressed specifically to people with low levels ofhealth literacy can be helpful. Well-designed education programmes can makea difference, and some evidence shows that people from disadvantaged groupsbenefit more from computer-based support than do people from affluentgroups if access barriers can be overcome.Policy briefImproving treatment decision-makingOne of the most common sources of patient dissatisfaction is not feelingproperly informed about (and involved in) their treatment. Shared decisionmaking,where patients are involved as active partners with the clinician intreatment decisions, can be recommended as an effective way to tackle thisproblem. Clinicians and patients work together as active partners to clarifyacceptable medical options and choose appropriate treatments. While not allpatients want to play an active role in choosing a treatment – because of agerelatedand cultural differences – most want clinicians to inform them and taketheir preferences into account.Well-designed training courses can improve the communication skills ofdoctors, nurses and pharmacists. As patients become more involved, theirknowledge improves, their anxiety lessens and they feel more satisfied.Patient coaching and question prompts help to empower patients to take amore active role in consultations. These prompts improve knowledge and recalland help patients feel more involved and in control of their care.Evidence-based patient decision aids facilitate the process of making informeddecisions about disease management and treatment. Decision aids can improvea patient's knowledge and their level of involvement in treatment decisions.They also give patients a more accurate perception of risk and encourageappropriate use of elective procedures.Improving self-management of chronic conditionsThree of ten Europeans suffer from a long-standing illness or health problem.Policy-makers in many countries are now seeking ways to shift resources intothe community in an effort to deal more effectively with chronic conditions. Inparticular, they are looking for ways to empower people to manage their ownhealth and health care, by providing them with effective self-managementsupport.Educating patients about self-management can improve their knowledge andunderstanding of their condition, coping behaviour, adherence to treatmentrecommendations, sense of self-efficacy and symptom levels. Computer-basedself-management education and support help to increase a patient's knowledgeand self-care ability and help improve social support, leading to better healthbehaviour and a better outcome.Self-management initiatives appear to work better when integrated into thehealth care system, instead of being organized separately. The role of healthprofessionals in guiding patients through the process is critical to successfullyimplementing these initiatives.Patients as decision-makersImplementation: it requires a whole-system approachGovernments, health authorities or payers looking for ways to inform andempower patients need to agree on clear goals and a coherent strategy, withactions targeted at macro (national), meso (regional) and micro (organizational)levels. This coherent strategy requires a whole-system approach, in whichsupport for patient involvement is built into the following types of initiatives:• patients' rights or charters;• regulatory requirements for provider organizations, including financialincentives and contracts;• procedures for professional regulation, including patient feedback oninterpersonal skills and quality of care;• provision of health information materials, web sites and portals;• training health professionals in communication skills;• self-care education and support integrated into all levels of health delivery;and• specific aids and techniques to help patients play a more active role.Despite several important gaps in the evidence, there is a sufficiently robustbody of knowledge on which to build strategies for strengthening patientengagement. Differences in morbidity patterns, cultural barriers and socialinequalities must be taken into account when planning strategies to promotegreater patient engagement. If these barriers can be overcome, the rewards arepotentially great, because people who are more informed and engaged tend touse fewer health care resources and to make more appropriate choices, leadingto better health outcomes. In addition to the potential for achieving greaterefficiencies in resource use, encouraging patients to take more control whenthey are ill may also prove to be an effective tool for improving public health.

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