Optimising cohort data in Europe

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Index	6
SYNCHROS (SYNergies for Cohorts in Health: integrating the Role of all Stakeholders)	7
1. Background	9
2. Objectives	10
3. The role of stakeholders	11
3.1. Stakeholder involvement	11
3.2. Stakeholder identification	12
3.3. Stakeholder engagement	16
3.3.1. Evidence-based synthesis and priority setting	16
3.3.2. Evidence-informed policy-making	18
4. Concluding remarks	20
References	21
Methodological considerations for optimising the exploitation of cohort datain Europe	23
1. Introduction	25
2. Cohort data harmonisation and integration	25
2.1. Strategies	26
2.1.1. Prospective harmonisation	26
2.1.2. Ex ante retrospective harmonisation	27
2.1.3. Ex post retrospective harmonisation	27
2.2. Analytical methods	28
2.3. Interoperability	31
3. Main methodological challenges	33
4. Best practices, solutions and implications for implementation	34
References	37
Ethical and legal considerations for optimising the exploitation of cohort data in Europe	39
1. Introduction	41
2. Domain-related challenges to cohort research	41
2.1. Research practices: collection, processing, access and sharingof data	41
2.1.1. Data collection	41
2.1.2. Data processing	43
2.1.3. Data access	46
2.1.4. Data sharing	47
2.2. Ethical requirements	50
2.2.1. Beneficence and non-maleficence	51
2.2.2. Autonomy and informed consent	52
2.2.3. Privacy and confidentiality	54
2.3. Legal frameworks	55
3. Best practices, solutions and implications for implementation	57
References	61
New data collection technologies: state-oftheart and impact on cohort research	69
1. Introduction	71
2. State-of-the-art	72
2.1. Mobile data collection	72
2.2. Social media data collection	73
2.3. Passive data collection	74
2.4. Geospatial technologies for data collection	75
3. Ethical and legal considerations	77
3.1. Autonomy	77
3.2. Confidentialtity and privacy	79
3.3. Consent	81
3.4. In summary: recommendations and prospects	82
4. Best practices, solutions and implications for implementation	84
4.1. Mobile technology	84
4.2. Social media	85
4.3. Passive data	85
4.4. Geospatial technologies	85
References	86
Strategic agenda for optimising cohort data exploitation in Europe	91
1. Introduction: Resources and Capabilities for an “Institute for Optimising Multistudy Integrative Cohort Research in Health”	93
1.1. Theoretical Background: Leveraging Resources and Capabilities	94
1.2. Analytical Approach: Stakeholders' consultations, Capabilities and Resources Analysis and Strategic Agenda	96
2. Pillar I: Standards - Standards for variables, minimal set of variables	97
3. Pillar II: Guidance - Guidelines of harmonised legal, ethical and organisational conditions for access	102
4. Pillar III: Inclusion - Participatory collaboration and knowledge exchange	109
5. Strategic Agenda	115
5.1 Overview	115
5.2 Strategic tasks	115
5.2.1. Pillar I: Standards - Initial Strategic Tasks	116
5.2.2. Pillar II: Guidance - Initial Strategic Tasks	117
5.2.3. Pillar III: Inclusion - Initial Strategic Tasks	118
6. Conclusions	119
References	120
Acknowledgement	122

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