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

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Exploring patient participation in reducing health-care-related safety risks 70 Table 4 .2 . Experts’ opinions on main themes of the questionnaire Association Le Lien Laboratoires Internationaux de Recherche EmPatient organization Communication adviser Association Française des Hémophiles Association de Soutien et D’Information à la Leucémie Lymphoïde Chronique et al Maladie de Waldenström DGOS EFS Regional health centre, Ile de France Haemovigilance correspondent Haemovigilance correspondent Haemovigilance correspondent Anaesthetist and haemovigilance correspondent (private hospital) Anaesthetist Haemato−oncologist Experts Opinions on main themes General information on blood transfusion and haemovigilance 1. Blood transfusion procedure strictly follows recommendations + ± 2. Post-transfusion DIA rate is very low (% when available) ± + + 24% + ++ + + ++ 25% 3. DIA return rate needs to be improved ± ++ - ++ ± ± + Information given to patients and relationship between doctor and patient 1. Written information on blood transfusion is systematically given to patients + - - + - - - - - - - 2. Poor information rate is mostly due to time constraints ++ + ± + 3. Doctors need to be trained on information modalities + - - ++ ++ ++ + 4. The way information is given is somehow not adapted - + + + ++ ++ + ++ 5. Patients have problems understanding given information ++ + ++ + + + 6. Doctors see more information as a constraint and sometimes ignore their + + + + + + responsibility to inform Information system 1. Patient’s transfusion file is computerized + + + ++ 2. Information exchange between health care facility and EFS is efficient - ++ - - + 3. Information system is working well - ++ ± 4. Information system insufficiencies create important problems - ++ ± + 5. Information system needs to be further developed ++ ++ ++ + + Adverse events, reactions and incidents 1. Reporting system for adverse events and incidents works well + ++ ± + + + + 2. Identification controls must be strengthened ++ ++ ++ ++ 3. Identity error is a health care management issue + + ++ + 3. Lack of culture of notifying about grade 0 incidents ++ ± + 4. Identification wristbands should be developed - ++ + ± + 5. It is sometimes hard to know which incidents require notification + + Patient involvement means: 1. involving patients in identity checks ++ ++ ++ ++ ++ + 2. participating in monitoring of side-effects ++ ++ ++ + + 3. asking questions ++ ++ 4. a positive role/effect + + - - - ++ + ++ 5. not everybody wants to get involved ++ ++ ++ - + - ++ Notes: ++ strongly agree; + agree; ± neither agree nor disagree (nuance); – disagree; – strongly disagree. Source: authors.
Blood transfusion safety in France: developing tools to support patients with patients. The key point is to listen to patients to understand whether they want to be involved or not. Where possible, the fact that the patient wants to be involved (or not) and/or to receive information (or not) should be formalized. Recommendation 3 – Develop information tools for patients with patients It is important to produce, adapt and standardize patient information tools with patients’ involvement to ensure the tools can be used to the fullest extent possible. Barriers such as language, vocabulary and – last but not least – health literacy should be taken into account. Where possible, it is recommended that the process of patient involvement be formalized. Recommendation 4 – Educate patients It is necessary to inform the general population on how the transfusion process works and to explain progress made in the field as part of building a safety culture. The development of health education and chronic condition self-management will promote patients’ involvement. Recommendation 5 – Engage patients in surveillance Participation of patients in their own surveillance of the transfusion process, related clinical procedures and potential undesirable side-effects of the transfusion treatment should be promoted. It is expected that this would help to reduce incidents and increase patients’ confidence in their shared responsibility for their own health outcomes. Recommendation 6 – Promote patient organizations and peer groups Patient organizations could give additional voice and support to transfusion recipients and help in the process of increasing health literacy and public information campaigns. Health care providers should help patients to identify these organizations. Recommendation 7 – Study patients’ attitudes Research is needed to better understand which patients are willing to get involved. This includes shared responsibility in the decision-making process and safety compliance, but also involvement in donor promotion campaigns among relatives, friends and communities. A summary discussion of patient involvement in blood transfusion in the Netherlands is provided in Annex 3. References 1. McClelland DBL, Phillips P. Errors in blood transfusion in Britain: survey of hospital haematology departments. British Medical Journal, 1994, 308:1205. 2. Davis RE, Vincent CA, Murphy MF. Blood transfusion safety: the potential role of the patient. Transfusion Medicine Reviews, 2011, 25(1):12–23. 3. Les transformations du service public de la transfusion sanguine. Paris, Rapport annuel de la Cour des Comptes, 2010 (http://www.ccomptes.fr/fr/CC/documents/ RPA/H_transformations-service-public-transfusion-sanguine.pdf, accessed 1 May 2012). 71
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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
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CoE Recommendation 2006/7 of the Co
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The 2005 United States act on patie
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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
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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
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Page 49 and 50: awareness of the sociomedical burde
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Page 65 and 66: Box 4 .1 . Definitions of adverse e
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Page 83: 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
Page 111 and 112: e desirable to have a special statu
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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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