Library for Engaged Research Practice

See: 

• Foundational Research Ethics and Principles
• Inclusion and Representation in Research
• Research Agenda Setting and Priority Alignment 
• Partnerships, Power and Research Leadership
• Global Research Equity and Preventing Extractive Research 
• Participant Protection and Ethical Research Practice
• Data Governance and Emerging Technologies 
• Benefit Sharing and Research Impact
• Recognition, Payment and Acknowledgement
• Accessibility and Sharing of Knowledge

Researchers designing studies often face recurring hurdles: How do we ensure consent is meaningful? How do we include underserved groups? How do we build equitable partnerships across countries? 

We have compiled a collection bringing together international frameworks, guidelines, and tools focusing on the practical issues researchers tend to ask themselves when shaping their proposals:

Foundational Research Ethics and Principles

• Declaration of Helsinki (Click to visit)
  • Purpose of resource: Ethical principles for medical research involving human participants.
• Nuremberg Code (Click to visit)
  • Purpose of resource: Foundational principles for ethical research, including voluntary consent and avoiding unnecessary harm.
• CIOMS International Ethical Guidelines for Health-Related Research Involving Humans (Click to visit)
  • Purpose of resource: International ethical guidance for research involving human participants.

Inclusion and Representation in Research

• NIHR INCLUDE Project (Click to visit)
  • Purpose of resource: Guidance on improving inclusion of underserved groups in health and care research. 
• INCLUDE Ethnicity Framework (Click to visit)
  • Purpose of resource: A tool to support the consideration of which ethnic groups to include in research and barriers to inclusion.
• NHS England Increasing Diversity in Research Participation (Click to visit)
  • Purpose of resource: Good practice guidance for engaging underrepresented groups in research.
• Bringing an Equity Centred Framework to Research (Click to visit)
  • Purpose of resource: Framework for embedding equity considerations throughout research design and practice.
• Equity, Diversity and Inclusion are Foundational Research Skills (Click to visit)
  • Purpose of resource: Commentary on integrating equity, diversity and inclusion across the research lifecycle.
• MESSAGE Policy Framework and Toolkit (Click to visit)
  • Purpose of resource: Practical tools to support embedding sex and gender considerations in research design, conduct and analysis

Research Agenda Setting and Priority Alignment

• WHO Strategy on Research for Health (Click to visit)
  • Purpose of resource: Guidance on aligning research priorities with population health needs and health system priorities.
• James Lind Alliance Priority Setting Partnerships (Click to visit)
  • Purpose of resource: Methodology for identifying research priorities jointly with patients, carers and clinicians.

Partnerships, Power and Research Leadership

• UKCDR Equitable Partnerships Resource Hub (Click to visit)
  • Purpose of resource: Guidance on building fair and equitable research partnerships, including sharing power, benefits and decision making.
• Participatory System Dynamics Modelling: Advancing Equity Through Contextualised Implementation Science (Click to visit)
  • Purpose of resource: Framework supporting equitable and context-sensitive planning and implementation of research and interventions.
• Community-Based Mental Health Interventions in Low and Middle-Income Countries (Click to visit)
  • Purpose of resource: Qualitative study identifying barriers, facilitators and the role of community and stakeholder involvement in developing and sustaining interventions.

Global Research Equity and Preventing Extractive Research

• Global Code of Conduct for Research in Resource-Poor Settings (Click to visit)
  • Purpose of resource: Principles for preventing exploitative research practices and promoting fairness, respect, care and honesty in international research collaborations. 
• COHRED Fair Research Contracting (Click to visit)
  • Purpose of resource: Guidance supporting fair and transparent research agreements between institutions in high-income and low and middle-income countries.
• ESSENCE Seven Principles for Strengthening Research Capacity in Low and Middle-Income Countries (Click to visit)
  • Purpose of resource: Guidance on supporting sustainable research capacity and leadership in LMIC institutions.

Participant Protection and Ethical Research Practice

• HRA Consent and Participant Information Guidance (Click to visit)
  • Purpose of resource: Guidance on consent processes and preparation of participant information and consent materials.
• CIOMS Guideline 4 and 6 (Potential Individual Benefits and Risks; Caring for Participants’ Health)
  • Purpose of resource: Guidance on balancing benefits and risks and supporting participants’ health needs including aftercare.

Data Governance and Emerging Technologies

• OECD Health Data Governance for the Digital Age (Click to visit)
  • Purpose of resource: Guidance on responsible governance of health data, including safeguards for public interest use and secondary data access.
• GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data (Click to visit)
  • Purpose of resource: Principles for responsible and fair sharing of genomic and health-related data.
• WHO Ethics and Governance of Artificial Intelligence for Health (Click to visit)
  • Purpose of resource: Guidance on ethical and responsible use of artificial intelligence in health research.
• Research Ethics and Artificial Intelligence for Global Health (Click to visit)
  • Purpose of resource: Discussion of ethical issues related to the use of AI in global health research.
• ICO Guidance on Artificial Intelligence (Click to visit)
  • Purpose of resource: Guidance on applying UK data protection law when developing or using AI systems.

Benefit Sharing and Research Impact

• Framework for the Promotion of Ethical Benefit Sharing in Health Research (Click to visit)
  • Purpose of resource: Practical framework to help researchers identify and plan benefit sharing opportunities across stakeholders and stages of the research lifecycle.
• The Cambridge Handbook of Health Research Regulation, Chapter 15: Benefit Sharing (Click to visit)
  • Purpose of resource: Discussion of ethical approaches to benefit sharing in health research including obligations to participants and communities. 
• MRC Framework on the Feedback of Health-Related Findings in Research (Click to visit)
  • Purpose of resource: Guidance on whether and how to return findings with potential health implications to research participants.

Recognition, Payment and Acknowledgement

• NIHR Payment Guidance for Researchers and Professionals (Click to visit)
  • Purpose of resource: Guidance on paying and reimbursing people involved in research.
• Health Research Authority Guidance on Payments and Incentives in Research (Click to visit)
  • Purpose of resource: Guidance on appropriate payments in research and avoiding undue influence. 
• CIOMS Guideline 13 (Reimbursement and Compensation) 
  • Purpose of resource: Guidance on reimbursement and compensation of research participants and avoiding undue inducement.
• UK Research and Innovation Guidance on Payment for Public Partners (Click to visit)
  • Purpose of resource: Principles for paying public partners for their contributions to research and funding activities.
• ICMJE Authorship Guidelines (Click to visit)
  • Purpose of resource: Guidance on fair attribution of authorship and recognition of intellectual contributions in research publications.

Accessibility and Sharing of Knowledge

• UNESCO Recommendation on Open Science (Click to visit)
  • Purpose of resource: Framework promoting equitable access to scientific knowledge and participation in science.
• WHO Knowledge Translation Framework (Click to visit)
  • Purpose of resource: Guidance on translating research evidence into accessible formats for policy and practice.