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8th European Health Forum Gastein
5th to 8th October 2005
Information Prerequisite for citizens involvement
Patients’ rights and access to information
Giovanna Gabriele
Spanish Patients’ Forum
The Right to INFORMATION: WHO WE ARE
The Josep Laporte Library Foundation (FBJL) and the Spanish Patient Forum (SPF) have carried different qualitative and quantitative research projects assessing patients and public opinion preferences in health care. The present paper communication is the global result of these three studies:
1.- The protection patients’ rights in European and non European health policies (FBJL 2005)
2.- The human dimension of the knowledge’s organisation webs in health and medicine webs through the patients’ “medical” deconstruction language (ISKO 2005)
3.- The Impact of the principles of Barcelona Declaration of Patients’ Associations Rights at international scientific literature (FBJL 2005) In process
The Right to INFORMATION: AIMS OF PATIENT RESEARCH
Aims of patient research
•To value the users perception and experience with health system.•To evaluate the produced changes in the health system and the need of new changes •To visualize new trends in the use of health services and self-care •To revise the Spanish public opinion about health topics
Ranking of "Access to
Information" Studies by Countries
USA
UK
FRANCE
CANADA
AUSTRALIA
NETHERLAND
SPAIN
The Right to INFORMATION: INTERNATIONAL CONTEXT
Gabriele, G. The Impact of the principles of Barcelona Declaration of Patients’ Associations Rights at international scientific literature (FBJL/MSD 2005)
Ranking of Patients'Rights Studies890
745700
322
77 40 8
0
200
400
600
800
1000
Main International Patients'
Rights by Subject
Nu
mb
er o
f S
tud
ies
Patient Decision Making
Physician -Patient Relations
Patient Participation
Access to information
Patient Satisfaction
Patient Education Access toInformationHealth Information Policy
The Right to INFORMATION: INTERNATIONAL CONTEXT
Gabriele, G. The Impact of the principles of Barcelona Declaration of Patients’ Associations Rights at international scientific literature (FBJL/MSD 2005)
The Right to INFORMATION: EMPOWER CHAINED
PREREQUISITES
HEALTH AGENTS INFORMATION
HEALTH SERVICES INFORMATIONSYSTEMS
HEALTH CARE INFORMATION
SYSTEMS
LEGAL INFORMATION POLICIESDEFINITIONS
HEALTH INFORMATION POLICIES
PATIENTS’PARTICIPATIONINDIVIDUALS HEALTH
INDIVIDUALS HEALTH INFORMATION RIGHTSINDIVIDUALS SOCIAL, CULTURAL, LINGUISTIC, EMOTIONAL NEEDS
FBJL RESEARCH IN PATIENTS AREA: RESULTS
Future Patient Survey” – Spain (2001)Need of improving physician-patients relationshipsLack of attention in patients’ rights
Information patients needs, what they want? (2002)
“Patients representatives expressed their preferences in 10 principles:
1.- Access to high quality health information respecting the plurality of information source.”
Information needs survey (2002) N: 653094% of women are interested in health34% of interviewed women think they have insufficient information
75% of women that acceded to health information had problems to understand the contents
FBJL RESEARCH IN PATIENTS AREA: RESULTS
Information needs survey (2002)Cancer is the topic that produces more worries to Spanish womenThe interest for health topics is bigger in young women and mothers with childrenIncreased interest in to accede a quality information about health concerns
Demoscopia survey (2002) N: 270050% Physician is the basic information resource for consumer, and the second are mass media.Only 42% of population search alternative information resources beyond doctor’s advice
FBJL RESEARCH IN PATIENTS AREA: RESULTS
Demoscopia survey (2002) 50% of interviewed made questions to its
physician. 70% of interviewed knew its rights as patients Less than 5% of population participated in a
patients’ association
“Future Patient” – Spain (2002) Qualitative Study
Exigency of personalized care and more time and information
Overcrowding of health systems
7.- Would you choice a public or a private service health care?
PUBLIC
40.0
PRIVATE
38.0
BOTH
18.2
NS
3.1
9.- Opinion about information service health care (GP and Paediatrics consultation) 7.2
12.- Social value about the information provided at secondary care 6.9
14.- Information about the evolution of disease provided at hospital 7.1
The Right to INFORMATION: SPANISH PATIENTS’ RATE
Considering the Information that you receive about your problem of health…….
RATING
MAIN RESULTS: Spain National Health Survey (Ministery of Health of Spain 2004)
15.- Social Value Scale about the follow sources of information PUBLIC
4.8
Information provided by Health Administration’s Services 4.8
Information about diverse canals of Patients’ Rights and Complaints
4.1
Information about legal measures adopted by health authorities 4.2
Information provided through Health Public Campaigns 5.4
Information about diverse Proceedings and Facilities to accede to medical specialists or to facilitate patient’s hospital admission
5.1
The Right to INFORMATION: SPANISH PATIENTS’ RATE
BUT Considering the Information with regard to a Social Value Scale the result is so different……. RATING
MAIN RESULTS: Spain National Health Survey (Ministery of Health of Spain 2004)
HEALTH SERVICES of Information
IF NOT GOOD
COMPLAINTS
NO KNOWLEDGEDISSEMINATION
ANDSEARCH OTHER
HEALTH SOURCESof Information
HEALTH AGENTSof Information
Patient ADVOCATE
IF NOT GOOD
COMPLAINTS
Patient’s Disinformation
The Right to INFORMATION: PATIENTS’ VIEWS
Standard Health Information Flow: PHASE I
PHASE I
4.- EXPERTPATIENTS=DOCTOR
AND/OROTHER HEALTH SOURCES
OF INFORMATION TO ADRESS TO
ADVOCATE AGENTSASSOCIATIONS
AND/ORINTERNET
INFORMATION
1.- PATIENTS/RELATIVESMEDICAL/HEALTH
INFORMATION SEARCHTHROUGH
The Right to INFORMATION: PATIENTS’ VIEWS
Standard Behavioural Search Mechanisms: PHASE II
PHASE II
The Right to INFORMATION: DEFINITIONS AND MODELS
A).- European Charter of Patiens’ Rights (2002)
“3.- Right to information
Every individual has the right to access to all information regarding their state of health, the health services and how to use them, and all that scientific research and technological innovation makes available.”
Prerequisite
Perspective of social model based on an
“Equality rights - universal access to health care system”
ACCESSSocial Model
Active Citizenship Network
The Right to INFORMATION: DEFINITIONS AND MODELS
B).- European Ombudsman (2005)
“The Right to information is the natural counterpart of the right to give or withhold consent to treatment. Put together, the two rights constitute the principle of informed consent.”
Prerequisite
Perspective of informative and communicative model based on an “equality and autonomy rights doctor-patient communication”
COMMUNICATIONCommunicative Model
Doctor-patient relationship
“Patients’ rights in Europe today.” European Ombudsman 2005
BUT………!!!!!
Legal Prerequisites for a better Patients’ Right and access to Information Implementation should must involve a:
CLEAR, UNIFORM and CONSISTENT Definition of
Health InformationAND
Health Service
Right to InformationAND
Access to Information
The Right to INFORMATION: LEGAL DEFINITIONS
.- ‘Health information’ should be mean- Information and an Opinion about
Physical, mental or psychological health of an individual
Respect Diverse NEEDS and LEVELS of Information and Communication
An individual’s expressed WISHES or SUGGESTIONS about
the present and future provision ofHealth services
Respect Patients’ Rights andAccess to Information
The Right to INFORMATION: LEGAL DEFINITIONS
.- ‘Patients’ Right and Access to information’ should be closely connected with a better
Positive/NegativeFEEDBACK OFINFORMATION
PATIENTS’ IMPACT
INFORMATION
PATIENTS’HEALTHCHOICES
HEALTH AGENTSCOOPERATION
OPENACCESS DRUGSINFORMATION
OPENACCESS HEALTH
INFORMATION
PATIENTS’EDUCATION
PATIENTS’ FEELINFORMATION
DOCTORCOMMUNICATION
PATIENTDECISION MAKING
The Right to INFORMATION: LEGAL DEFINITIONS
Assess; maintain or improvethe opinion about individual’s healthAnd Health Information service; OR
Based at aCollaborative, Interactive and
Multidisciplinary MODEL
The Right to INFORMATION: LEGAL DEFINITIONS
.- ‘Health Information Services’ should be involve a
Health InformationSystems Research
Healthcare Policies
PatientsRelatives………..
Systems ofHealthcare
Accreditation
Health InformationAgents
Health ProfessionalsPatients’ Advocates
The Right to INFORMATION: CONCLUSIONS
IMPLEMENTTHE HIGHEST STANDARDS OF
CARE AND RESPECT INFORMATION RIGHTS
EMPOWER HEALTH CARE INFORMATION
SYSTEMS
IMPLEMENT AND REVISION LEGAL INFORMATION POLICIES DEFINITIONS
REDESIGN HEALTH INFORMATION POLICIES
IMPROVE REAL AND OPERATIVE PATIENTS’PARTICIPATION in HEALTHCARE POLICY
KNOW, PREVENT, PREVISION DIVERSE, PRESENT, FUTURE, EMERGENT INDIVIDUALS HEALTH
INDIVIDUALS HEALTH INFORMATION RIGHTSINDIVIDUALS SOCIAL, CULTURAL, LINGUISTIC, EMOTIONAL NEEDS
The Right to INFORMATION: INTERNATIONAL BEST MODELS
1.- NORWAY (Patients’ Choice Rights)
The Norwegian Information Service “Fritt sykehusvalg Norge”
2.- AUSTRALIA AND NEW ZEALAND (Complaints and Advocay information system)
3.- NETHERLANDS (Patients’ Counseling)
Patient Advisor at Achmea (Achmea Zorgbemiddeling)
4.- DENMARK: (Patients’ Choice Rights)
“Free Choice” Program
5.- CANADA (Health Policies Patients Participation; Information and Education Patients’ Rights)
“Projet d’alphabétisation-santé”
The Right to INFORMATION: INTERNATIONAL BEST MODELS
6.- USA (Public Information Policy ; Free Hospital Choice; Patients’ Participation)
“Joint Commission on Accreditation of Healthcare Public Information Policy Revisions”
“Memorial Sloan-Kettering Cancer Center: Patient Satisfaction Questionnaires”
“Hospital Quality Alliance (HQA): Improving Care Trough Information” “Medicare Patients’ Rights”
7.- UK: (Patients’ Education)
“National Health Service Programs”
EXCELLENCEHEALTH SERVICES
of Information
EXCELLENCEHEALTH SOURCES
of Information
EXCELLENCEHEALTH AGENTS
of InformationBest
InformedPatient!!
Conditio sine qua nonExcellent Health
Policies
Friendly Model of Health Information Flow
The Right to INFORMATION: CONCLUSIONS
AUSTRALIA Consumer Adviser Ombudsman Health Services Complaints Commissioner Registration Boards
CANADA Commissaire local o régional Comité des usagers Centre d’assistance et d’accompagnement aux plaintes (CAAP) Conseils régionaux de la santé et des services sociaux Commissaire à la qualité des services Médecin examinateur Protecteur des usagers
NORWEY Patient Ombud Norsk pasientregister PatientInjury Compensation Board Appeal Board for Grants to Medical Treatment Abroad
UK (NHS) Health Service Commissioner Health Service Ombudsman Patient Advice and Liason Service Citizen’s Advice Bureau IndependentComplaints Advocacy Service (ICAS)
DENMARK National Patients Complaints Board (PCB) PALS Complaint Manager
FINLAND Patient Ombudsman, : Director responsible of th unit care State provincial Offices The National Authority for Medicolegal Affairs
SPAINDefensor del PacienteAtención al UsuarioInspección SanitariaGerencia HospitalariaDefensor del Pueblo
Advocate Defense Mosaic: UE and non UE Countries
