• Study with Liverpool

      Study with Liverpool

      Study in Liverpool

    • All study opportunities
    • Results 2018
    • Undergraduate
    • Postgraduate taught
    • Postgraduate research
    • Foundation courses
    • Access courses
    • International students
    • Continuing education
    • Continuing professional development
    • Study globally

    • Study in London
    • Study in China
    • Study online
    • 96%+ of our graduates are in employment or further study six months after graduation. Visit Results 2018.

  • Our research

      Our research

      Research

    • Our research
    • A-Z of research groups
    • REF 2021
    • Postgraduate Research

    • PhD degrees
    • Liverpool Doctoral College
    • Research and business collaboration

    • Collaborate with us
    • How you can work with us
    • Research with real world impact

  • About us

      About us

      Our story

    • About the University
    • Key people
    • Accounts and main documents
    • Strategy 2026
    • Equality, Diversity and Inclusion
    • Key information

    • News
    • Events
    • Departments
    • Library
    • Alumni
    • Sports
    • Conferences
    • Jobs
    • Accommodation
    • Our locations

    • Maps
    • Contact us
    • Advancing knowledge to transform lives

    • Sign in
    • Staff
    • Students
  • A-Z
Skip navigation
University of Liverpool Logo
Toggle mobile navigation
  • Study with Liverpool

    96%+ of our graduates are in employment or further study six months after graduation. Visit Results 2018.

    Study with Liverpool

      Study in Liverpool

    • All study opportunities
    • Results 2018
    • Undergraduate
    • Postgraduate taught
    • Postgraduate research
    • Foundation courses
    • Access courses
    • International students
    • Continuing education
    • Continuing professional development

      Study globally

    • Study in London
    • Study in China
    • Study online
  • Our research

    Research with real world impact

    Our research

      Research

    • Our research
    • A-Z of research groups
    • REF 2021

      Postgraduate Research

    • PhD degrees
    • Liverpool Doctoral College

      Research and business collaboration

    • Collaborate with us
    • How you can work with us
  • About us

    Advancing knowledge to transform lives

    About us

      Our story

    • About the University
    • Key people
    • Accounts and main documents
    • Strategy 2026
    • Equality, Diversity and Inclusion

      Key information

    • News
    • Events
    • Departments
    • Library
    • Alumni
    • Sports
    • Conferences
    • Jobs
    • Accommodation

      Our locations

    • Maps
    • Contact us
  • Search

A-Z

Sign in: Staff/Students

News

Tuesday, 21 March

Browse news stories

  • All news
  • All opinion

Newsletter

  • Sign up
News

Browse news stories

  • All news
  • All opinion

Newsletter

  • Sign up
  • Published: August 12, 2022

Postcard: Citizens’ jury debate ethical use of electronic health data in Uganda

Citizens Jury Team Photo

Dr Lauren Walker from the University’s Department of Pharmacology & Therapeutics travelled to the Infectious Diseases Institute (IDI) at Makerere University in Kampala, Uganda to work on the E-enrich project alongside colleague Professor Catriona Waitt, who has been based at IDI since 2015.

Whilst the UK has well established electronic medical records and systems by which data may be accessed by researchers, many lower income countries such as Uganda are in an earlier phase of adoption of electronic medical records. Therefore the University of Liverpool’s Knowledge Exchange funding provided the perfect opportunity to strengthen our partnership and obtain preliminary data from Uganda.

On 21 and 22 July we hosted what we believe may have been the first healthcare-related citizens jury in Uganda, which aimed to garner attitudes towards the use of electronic medical data in the research context. A citizens’ jury is an approach ideal for new or complex areas, and enables a ‘social license statement’ to be drafted to guide policy and practice. This approach has been used on the same topic in the UK, and we drew from their example, with adaptations made to map to local context.

Applications for jurors were sought from hospitals and clinics around Kampala over a two month period and 15 were selected as representatives. Over two days, four experts provided evidence on how data are collected and used, the importance of data protection and management and on bioethical considerations and challenges. Alongside the expert testimony, we hosted interactive sessions involving both data science and ethical scenarios to ascertain the ethical themes that arose surrounding these sensitive topics. These helped to shape the overall license, blending across a triad of faith, culture and human rights. Appropriate time for discussion and debate was provided, together with the use of art, photography, film, drama and dance to capture ideas and themes.

The final verdict was that jurors were unanimous that with appropriate consent, electronic medical data could be used in a research context provided the individual or group seeking to use the data had a very clear proposal and aims together with a data protection and management plan that could be approved by a gatekeeping committee. In contrast to other settings, they felt that no type of medical data (for example relating to HIV status or sexual health) should be privileged, as a complete dataset is necessary to draw the most accurate conclusions from research.

The event was supported by the Executive Director and Senior Management Team at IDI, where there is a desire to adopt this approach to other emerging and complex areas in healthcare research. We are delighted by how successful our first citizens’ jury has been. All team members and jurors described how their understanding of the topic had increased significantly, rated the jury highly, and are keen to participate in future events, of which we hope there are many!

Alongside specific clinical pharmacology research questions, our portfolio aims to increase equity of access to research and provide ethical frameworks for novel and adaptive study designs. Examples include fair inclusion rather than systematic exclusion of pregnant and breastfeeding women in clinical trials; clinical trials in outbreak settings or during acute severe illness; and adaptive study design – with such complex considerations of risk and benefit, the citizens jury provides a strong framework to understand and simultaneously respond to community perceptions. We intend to further showcase this event as an exemplar of how citizens jury methodology can be adapted to culturally diverse and lower-resource settings.

Artwork produced by citizens' jury

Photo credits: Tabu Capital (@TabuCapital)

Read more
Postcard: MicroAge team showcases research at Bluedot Festival.

Category

  • Featured Postcard
  • Research
  • University home page

Tags

  • Faculty of Health and Life Sciences
  • Institute of Systems Molecular and Integrative Biology
  • Postcard
  • public engagement with research
  • Uganda

Categories

  • News
  • Expert Opinion
    • Comment
    • The Conversation
    • The Liverpool View
  • Becoming an expert
  • Postcard
  • Staff News

For Media

  • Press Office Contacts
  • Press release archive

Latest News

All recent news

FASER detects first ever high energy neutrinos produced by a particle collider

Tips to keep yourself and your belongings safe

University wins Varsity for eighth year in a row

Guild Student Officer Elections: Have Your Say

Postgrad Live Study Fair returns to Liverpool

Social Media

Latest from @livuninews

A new exhibition featuring a selection of iconic posters used to promote @cunardline services in the 1920s & 1930s to open at our @VictoriaGallery.
Find out more➡️https://bit.ly/3TsCSKO

Twitter 1637758595004792833

Congratulations to Prof Paula Williamson (@prw_paula) and the @COMETinitiative team, who have been awarded the inaugural @The_MRC Open Science Impact Prize in recognition of their globally impactful work helping to improve the relevance of clinical trials: https://news.liverpool.ac.uk/2023/03/16/mrc-impact-prize-for-initiative-helping-to-improve-the-relevance-of-clinical-trials/

Twitter 1636364500072005632

"Everybody should have the basic digital skills and confidence to safely engage with an increasingly digital world." Read about the work Prof @sjyates has been leading to propose a Minimum Digital Living Standard (MDLS) for UK households ➡️ http://bit.ly/3TfnXDQ
@CityUniLondon

Twitter 1635949265942982656
  • facebook Facebook
  • Twitter Twitter
  • youtube Youtube
  • instagram Instagram

Press Release Archive

  • 2023
  • 2022
  • 2021
  • 2020
  • 2019
  • 2018
  • 2017
  • 2016
  • 2015
  • 2014

Browse news stories

  • All news
  • All opinion

Newsletter

  • Sign up
The Original Red Brick The Original Red Brick

University of Liverpool
Liverpool
L69 3BX
  • Liverpool city centre campus map
  • Find us
  • +44 (0)151 794 2000
  • All contact details
  • Call us

  • University of Liverpool – a member of the Russell Group
  • Terms and Conditions
  • Modern slavery statement
  • Accessibility
  • Facebook
  • Twitter
  • Youtube
  • Instagram
  • Linkedin