Exploring patient participation in reducing health-care-related safety risks

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Exploring patient participation in reducing health-care-related safety risks 64 to be fundamental to improving the development, use and understanding of these documents by all actors. To create a good information tool for patients, it is necessary to meet those who have received a blood transfusion, see the documents they received, evaluate their knowledge and investigate the problems/information presented to them. Only after such an assessment can a useful tool start to be (co)produced (Expert 8). Experts made several suggestions for making patient information more appealing and efficient (Box 4.3). The need to renew information on blood transfusion given to patients is heightened by the fact that medical knowledge is evolving fast and blood transfusion is still associated with fear by some patients. Box 4 .3 . Experts’ main suggestions to improve information on blood transfusion provided to patients “Too much information kills information. What is important is to work on the impact of information, to catch people’s attention” (Expert 11). » General information on blood transfusion could be broadcast through television at the patient’s bedside before receiving transfusion (Expert 11). » Use of podcasts or videos telling patients’ stories (Expert 11). » Documentaries on blood transfusion should be made to show progress in the area of safety (Expert 1). » The hospital orientation booklet should state the idea that patients to be transfused must receive related information and, if not provided, they should ask for it (Expert 3). » A public campaign on questions over the safety of blood transfusion could be initiated (Expert 2). » The Internet can be used to inform about risks, treatment alternatives and medical procedures (Expert 14). » Educational and pictorial information on blood transfusion could be provided via the Internet (maybe as part of the EFS web site) using short, informational films (Expert 10). » A web site could be used to provide patients with stories from LPB recipients; various videos involving medical staff, EFS staff and patients; a list of frequently asked questions on blood transfusion; a forum, and so on (Expert 8). » The general public should be informed about blood transfusion via blood donation organizations. » Information could be given at school; children are a good way to transmit information (experts 9 and 12). » Focus should be placed on human specificity of LBPs and not only on risks, with blood transfusion being part of a human chain, from blood donation to transfusion (Expert 12). Patient involvement Context Working with patients, giving them responsibilities and informing them of goals and strategies used could improve adherence, quality and safety of treatments and outcomes (27). Most of the adverse effects of blood transfusion are due to errors and suboptimal care during the transfusion process, and patients could play a significant role at this stage (2). According to Expert 15, the French law dealing with modernization of the health care system introduced in 2002 22 put an end to medical paternalism. Patients have increasingly become able to question doctors and, as a consequence, public authorities have started to consider how patients could take part in medical decisions. The most involved patients are generally highly active in patients’ organizations. 22 Loi No. 2002-303 du 4 Mars 2002.
Blood transfusion safety in France: developing tools to support patients However, patient engagement in their own care requires preparation, follow up and evaluation to ensure a balanced approach to improving patient safety, supported by constructive dialogue with health care providers. In other words, implementation of “health democracy” requires time. Involving patients in their own care Patients’ involvement in their own process of care depends on many individual and contextual factors, including age, level of education and pathology. Family history and cultural background, level of health literacy and emotional support are very important in the patient–doctor dialogue and directly affect the degree of active patient involvement in care. It seems important to understand the gap between “seeking information” and “getting involved”. Durand (27) adds that patients’ commitment will depend on their cognitive capacities, psychological state and what they hear from the message delivered by health care professionals. In addition, beliefs (linked to illness, the role of professionals and so on) play a significant role in the choices patients make. Language and understanding remain important barriers. Better informed patients are more likely to be able to talk about treatment risks and to take care of themselves. Provision of general information by health care professionals is only the first step in patient involvement. In the blood transfusion process, different ways in which patients could get involved include (2): » giving informed consent to receive blood (information on risks, benefits and alternatives); » contributing to reducing identification errors, with active patient involvement in identity checks; and » reporting transfusion-related adverse events (immediate and delayed side-effects) – further involvement will enable patients to ask relevant questions and will lead to shared responsibilities and care decisions. The expert interviews revealed various opinions, a common element of which was the fact that further involvement of patients would certainly have a positive effect on the outcomes of care and patient satisfaction (Box 4.4). Case study – the example of one blood transfusion service: qualitative and quantitative interviews of recipients Method A questionnaire-based pilot survey (see Annex 2) was performed at the EFS centre in the city of Tours between 1 and 15 July 2011. The objectives were to evaluate the understanding of written and oral information on transfusion for a limited number of patients and to seek advice on enhancing communication and patient involvement in the transfusion process. The questionnaire was distributed to transfused adult patients treated for chronic conditions in the chosen location and was completed on site. As a pilot survey, 65
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Exploring patient participation in
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ABSTRACT Patients’ rights have be
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iv Patient information: the link be
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vi LIST OF TABLES, FIGURES AND BOXE
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ACKNOWLEDGEMENTS The editors would
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LIST OF ABBREVIATIONS ABHR alcohol-
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FOREWORD Health is a social value a
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ChApTER 1. pATIENTS’ RIGhTS AND p
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Box 1 .1 . contd Reporting and Lear
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The causal mechanisms through which
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» be involved in routine monitorin
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elationships within the complex env
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ChApTER 2. pATIENTS’ RIGhTS AND p
Page 27 and 28: CoE Recommendation 2006/7 of the Co
Page 29 and 30: The 2005 United States act on patie
Page 31 and 32: The right to participate in policy-
Page 33 and 34: The right to participate in quality
Page 35 and 36: » engaging with patient representa
Page 37 and 38: hampered by the written and spoken
Page 39 and 40: prevents misunderstandings and shap
Page 41 and 42: Health care providers should nevert
Page 43 and 44: Recommendation 7 - Encourage the av
Page 45 and 46: 20. Constitution of the World Healt
Page 47 and 48: ChApTER 3. pATIENT pARTICIpATION IN
Page 49 and 50: awareness of the sociomedical burde
Page 51 and 52: Patient participation in hand hygie
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Page 65 and 66: Box 4 .1 . Definitions of adverse e
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Page 73 and 74: The heterogeneity of situations and
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Page 83 and 84: Fig . 4 .12 . Patients’ response
Page 91 and 92: Patient safety, rights and medicati
Page 97 and 98: Fig . 5 .3 . Frequency with which d
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Page 109 and 110: Patient participation in elective s
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Patient participation in elective s
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Patient participation in elective s
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» being involved in monitoring and
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Other studies on patient attitudes
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Information about patients’ exper
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available evidence suggests that in
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Adverse events Respondents from the
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Feeling safe Five per cent of hospi
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probability proportional to populat
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care professionals’ and patients
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group recommends that patient invol
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13. Hibbard JH et al. Can patients
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52. Triemstra M et al. Measuring cl
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2009 (http://www.bradfordresearch.n
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of a small-scale patient survey add
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Box 8 .2 . Curricula and CME Chapte
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is provided through interaction of
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Box 8 .4 . Patient education Chapte
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ANNEX 1. QUOTATIONS FROM INTERNATIO
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(2) When designing adverse event re
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17) If yes, do you think this was m
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Box A3 .1 . Reporting procedure Pat
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Box A3 .2 . contd Haemosiderosis Ha
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ANNEX 4. pATIENT QUESTIONNAIRE ABOU
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ANNEX 6. WhO pATIENT SAFETY pROGRAM
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especially those in intensive care.
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ANNEX 7. hANDOVER pROjECT Paul Bara
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(a) Provide new insight into the ro
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Johnson J, Barach P. Handovers of p
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Enhancing the patients’ role in p
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Enhancing the patients’ role in p
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