Public Health Research Data Forum

The Public Health Research Data Forum brought together more than 20 funders of global health research. Its aim was to support equitable, ethical and efficient ways of sharing health research data, that accelerate improvements in public health.

Our current activities to support data sharing in public health emergencies build on the forum’s work.

Our commitment

The commitment of forum partners to advance the sharing of research data to improve public health is set out in a joint statement published by The Lancet. 

Research

The Worldwide Antimalarial Resistance Network: lessons for the development of data platforms

We funded a detailed case study of the Worldwide Antimalarial Resistance Network (WWARN), a pioneering data sharing initiative. The research, which was undertaken by Elizabeth Pisani and Stella Botchway, involved a detailed records review, in-depth interviews with stakeholders and a seminar. 

Read the full report, or download the summary [PDF 29KB].

Research into stakeholders’ views on the ethics of data sharing

We funded a major study to gauge views on the ethics of data sharing among research stakeholders in India, Kenya, South Africa, Thailand and Vietnam.

A key outcome was an online resource for researchers and ethics committee members. It brings together guidance, policies and articles on data sharing.

Read a summary of the study: Ethical sharing of health research data in low- and middle-income countries [PDF 50KB]  

See the Journal of Empirical Research on Health Research Ethics for a series of articles describing the study results.

Research on opportunities and challenges around data linkage

Data linkage means bringing together two or more sources of information which relate to the same individual, event, institution or place. We commissioned research to explore the opportunities and challenges around data linkage in public health research.

The work was done by researchers at the:

  • University of the West of England, UK
  • University of Cape Town, South Africa
  • Centre for Injury Prevention Research, Bangladesh.

The research looked at low-, middle- and high-income countries and used a mix of literature review, case studies and expert interviews. 

Read the final report [PDF 1.7MB] and the summary [PDF 70KB]

Research on how to enhance data discoverability and re-use 

We commissioned research to evaluate how forum partners could make research datasets easier for potiential users to discover and re-use.

The research team was led by Dr Tito Castillo at the University of Cambridge, with partners from the: 

  • Farr Institute
  • London School of Hygiene and Tropical Medicine
  • Open Data Foundation
  • Ubiquity Press
  • UK Data Archive.

Read the:

Our seminar on 30 July 2014 explored how access to research data could be made easier and more efficient. Catch up with the presentations.

Research on building capacity and skills for data sharing

Conducting research in public health is time-consuming and expensive. Ensuring that research data, along with its published findings, is made widely available to the research community leads to more discoveries and greater efficiency.

The William and Flora Hewlett Foundation commissioned the Open Knowledge Foundation and Frost & Sullivan to:

  • assess the current provision of skills for data management and analysis
  • identify current challenges and support gaps in research data management. 

Read the report: Public Health Research Data Forum: Supporting capacity and skills development for public health data research management in low- and medium income countries [PDF 847KB]

Best practice for data-sharing policies

We compare Public Health Research Data Forum funders’ policies and guidance to identify commonalities and differences and inform best practice.

Read the summary of funders' data sharing policies [PDF 288KB]

Using data citation tools in public health research

Systems that enable the citation of datasets can help researchers and funders to track the use and impact of re-usable research data.

We commissioned the Digital Curation Centre to examine:

  • existing and emerging data citation systems
  • the opportunities and challenges around their use in public health research.

Read the report: Enabling the citation of datasets generated through public health research [PDF 755KB].

Case study

  • IHOPE [PDF 105KB] – using large-scale linked data to target service improvements for Australian Aboriginal people.