Mhairi Aitken(Primary Presenter), Carol Porteous, Emily Creamer
Objectives and Approach: Our research aimed to understand public expectations regarding “public benefits” from health informatics research.
In May and June 2017 three full-day deliberative workshops were held with members of the public across Scotland (between 20 and 25 participants per workshop). Participants were selected through quota sampling to represent key demographic characteristics. Workshops were structured around brief introductory presentations, videos in which data scientists presented the ways in which their research was anticipated to lead to public benefits, small group discussions, plenary discussions and activities.
Results: Workshop participants generally conceptualised “the public” as being “everyone” and had an inclusive view of this often taking an international or global perspective. This led to preferences for research to benefit the widest possible public, however participants also discussed the potential for benefits to be focussed at vulnerable or disadvantaged groups. There were wide-ranging views on what would constitute a “benefit” and participants generally acknowledged the value in keeping this loosely defined. A key theme to emerge was that, while some research might benefit particular individuals or groups more than others, the benefits should be societal benefits. In discussing the various data science projects presented, it was considered important that research had mechanisms in place in order to realise the benefits it was aiming for.
Conclusion/Implications: Perceived public benefits are crucial for maintaining public support for health informatics research. Our workshops found that there is value in keeping "public benefits" as a broad, loosely defined term. Nevertheless, across each of the workshops the discussions suggested that research should benefit society as widely and fully as possible.
Dorota Chapko (Primary Presenter), Jessica Butler, Corri Black, Marjorie Johnston, Heather Clark, Caroline Fall, Kalyanaraman Kumaran, Ghattu V Krishnaveni, Murali Krishna, Giriraj Chandak, Siraj Sahariah, Meera Gandhi, Alison Murray
Objectives and Approach: Our teams in Aberdeen, Mysore and Mumbai have established general population cohorts that have provided evidence on the early-life origins of later-life diseases. In 2016, we engaged with the participants of the Aberdeen Children of the 1950s (62-68,N~8,400) in an event attended by 350 study members. We are also engaging with members and data guardians of Mysore Parthenon Cohort (20-21y,N~500), Mysore Birth Records Cohort (51-83y,N~750), and Mumbai Maternal Nutrition Cohort (5-11y,N~1,600). This qualitative project utilises focus groups and individual interviews. The goal is to understand their attitudes and perceived public benefits towards future novel data collection, data platforms and biorepositories.
Results: The ACONF event attendees were very willing to volunteer for further studies. The highest support was for ‘provide a blood sample’ (92%) and the lowest for ‘take an online survey’ (83%). They were satisfied with data governance but had incomplete understanding of linkage possibilities with their data. Through the ongoing activities in Mysore and in Mumbai, we aim to achieve the following: 1) Develop awareness of health informatics through public engagement with participants and researchers; 2) Explore attitudes and potential barriers to creation of secure data linkage between imaging, laboratory, health data and outcomes to facilitate future linkage studies; 3) Understand what is required for interoperable, secure data storage and plan future biorepository as a resource for researchers that will build over time in India.
Conclusion/Implications: The proposed activities will inform preparation of a large scale grant to investigate the hypothesis that early life environment affects future risk of mental illness and cognitive ability globally. They will also begin to create a platform of enduring value for future cross-cultural population research.
Suzanne Goopy, University of Calgary (Primary Presenter)
Tanvir Turin, University of Calgary
Anusha Kassan, University of Calgary
Mary O'Brien, University of Calgary
Gavin McCormack, University of Calgary
Jonathan Chapman, The City of Calgary
Irina Charania, University of Calgary
Carla Ferreira , University of Calgary
Halley Silversides, University of Calgary
Objectives and Approach: This project presents the idea of "Empathic Cultural Mapping" (ECM). ECM is an interactive story map which brings together vignettes taken from individual stories curated with "big data" derived from places such as Statistics Canada, the City of Calgary, and library holdings at the University of Calgary. ECM seeks to challenge users to re-imagine long held constructions around sectoral, and disciplinary driven interpretations and categorizations of lifestyle, consumption, health, and the environment. ECM seeks to encourage knowledge users from multiple sectors to think beyond what is known and to consider what might be possible.
Results: ECM is a creative interactive undertaking. In developing ECM, a range of creative research processes have been used to record and tell the stories of a small group of newcomers (defined as those who migrate, seek refuge, or claim asylum in Canada) and position these within large data. A desire to improve the health and wellbeing of individuals and communties through opening processes of dialogoue between local government, non-government organizations, communitites, and individuals lies at the heart of this project. Knowledge and sense-making are key features of individual and community empowerment within the ECM and are viewed as powerful stimuli for change as well as powerful allies for health and a buffer against its threats.
Conclusion/Implications: ECM creates, shares, and brings together individual stories and 'big data'. It identifies needs that impact health in the everyday. It seeks to improve awareness of the world around us. It encourages people to communicate their experiences. Finally, it achieves its goals by using creative processes.
Jo Hobbs, University of Manchester (Primary Presenter)
Mary Tully, University of Manchester
Iqra Ali, Chair of Greater Manchester Connected Health Cities public forum
Objectives and Approach: In 2013 the UK Government introduced a data sharing opt-out programme called Care.data. This programme aimed to extract data at GP level and anonymise data which could then be shared amongst those inside and outside the NHS. This programme was greeted with widespread public mistrust and abandoned in 2016. Care.data demonstrated that public concerns can de-rail efforts to improve data sharing. The key objective for this piece of work was to use public engagement activities as a means of identifying and unpicking public concerns about data-linkage and sharing as part of wider efforts to establish a social license in health.
Results: Discursive responses were analysed using thematic analysis and word frequency analysis. Combining thematic analysis and word frequency analysis helped to unpack the data by facilitating the identification and perceived importance of broad themes and sub-themes.
To date, analysis has identified a number of ‘Global Themes’ and 'Sub-themes' which will need to be addressed before we can establish a social license in health and social care with the public:
Global Themes related to:
Privacy and confidentiality/breaches of privacy and confidentiality
Sub-themes related to:
• Security of systems
• Rest of the world security
• What a third party might do with health data
• Data ownership
• Health data being used for private and or commercial profit
• How others perceive you
• Access to future treatment
Conclusion/Implications: Our deliberative discussions indicated concerns across culture and ethnic groups that data-sharing and linkage might be used to ‘gate-keep’ future access to treatment. Given that congruent social licenses are built on legitimacy, credibility and trust further work is required to allay public fears regarding future access to treatment.
Michael Lenczner, Powered by Data (Primary Presenter)
Jonathan McPhedran Waitzer, Powered by Data
Objectives and Approach: The nonprofit sector is uniquely positioned to advocate for a strong political commitment to linked administrative data. As a sector, it could directly benefit from that data for impact evaluation and for advocacy. It is also closest to the people who are most likely to be negatively impacted by the resulting surveillance and stigmatization.
We are building a network of social service organizations, foundations, and advocacy groups to explore the possibility of creating a shared policy agenda. We’ve developed a coalition model that engages these unequally resourced stakeholders on equal footing - with the goal of enabling fully-informed and equitable participation.
Results: This coalition is working to develop a set of conditions for increased administrative data linking that reflect the shared interests of funders, service providers, advocacy groups, and beneficiary communities. We are also researching the legislative and policy changes required to enable that desired outcome.
In developing this agenda, and bringing it to government, we hope to provide the social license (and public pressure) required to create an enabling policy environment for increased data linking in Canada.
Beyond developing a shared agenda, this initiative also aims to deliver long-term outcomes involving increased data policy literacy among Canadian nonprofits. This coalition represents collaborative infrastructure to enable ongoing, coordinated input from the nonprofit sector on key questions of data governance and policy.
Conclusion/Implications: This equity-focused, multi-stakeholder coalition approach to digital policy development represents a significant innovation in public engagement. We’re excited to share our process and key learnings with conference participants with hopes of receiving expert feedback while inviting key allies to engage in this emerging initiative.
Hesam Izakian, PolicyWise for Children & Families (Primary Presenter)
Hitesh Bhatt, PolicyWise for Children & Families
Robert Jagodzinski, PolicyWise for Children & Families
Leslie Twilley, Entelechy Resources Consulting Inc.
Xinjie Cui, PolicyWise for Children & Families
Objectives and Approach: Data from 20 programs of six Government of Alberta ministries (Advanced Education, Education, Health, Children’s Services, Community and Social Services, and Justice and Solicitor General) were linked anonymously. The data spans six years from 2005/06 to 2010/11 and consists of almost 50 million records corresponding to over 2 million unique Albertans aged 0 to 25 years. A data visualization tool called the Program Overlap Matrix summarises the overlap rates among the programs. It is comprised of a matrix of squares, where each cell represents the overlap between two programs.
Results: The Program Overlap Matrix is publically available at https://visualization.policywise.com/P2matrix/. It consists of overlap rates between programs in any study year (2005/06 to 2010/11), individual years, the first year vs. future years, and the last year vs. previous years which can be used to answer many policy-related questions such as: other service use (e.g., what other services do ESL students use?), over-represented programs (e.g., in what programs are Child Care Subsidy clients over-represented?), resilience (e.g., what is the proportion of Child Intervention clients in post-secondary institutions?), transitions (e.g., what types of services do students with special needs receive as they transition to adulthood?), and time trend (e.g., what types of services did Income Support clients receive in the past?)
Conclusion/Implications: The program overlap matrix is a powerful tool to discover relationships between programs. It is a useful instrument to inform public and policy-makers about the overlap rates between government programs. It can be used to answer a variety of policy-related questions.