Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Background The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. Main body The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. Conclusion The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.

Parents Taking Action: Adapting a Peer-to-Peer Program for Parents Raising Black Children With Autism

We report on the adaptation and delivery of a peer-led, 14-session manualized program, Parents Taking Action, among parents raising Black children with autism in low-income neighborhoods. We engaged a community advisory group made up of parents and grandparents of Black children with autism, a Black self-advocate, clinicians, and other stakeholders to culturally adapt the intervention. Three Parent Leaders delivered the program to seven Black mothers of children with autism. We collected and analyzed quantitative and qualitative data on intervention implementation. Our study revealed key participation barriers and facilitators facing families of Black children with autism, particularly financial and other material burdens, which can inform efforts to better serve parents experiencing the effects of poverty and racism.

Shining Light and Creating Solutions: Health and Social Needs of Older Affordable Housing Residents

Aging within a community requires access to health and social services. This project lays the groundwork for an innovative, three-part health and social services intervention intended to improve the health and well-being of older affordable housing residents in a low-income, vulnerable Baltimore neighborhood. We will report on the first part, an assessment of residents’ unmet health and social service needs and their ideas for meeting these needs. With guidance from a community advisory group of older residents (a key program component), we are conducting structured interviews with 50 elders to identify residents’ needs and interests. These findings will inform the next project segments: Part 2- exploring how the Village model (in which neighbors identify and offer needed services to help their neighbors age within a community) can be adapted for an affordable housing setting, and Part 3- adapting an evidence-based housing-plus-services model to meet older residents’ unmet needs.

COVID 19 and the Pedagogy of Culture-centered Community Radical Democracy: A Response from Aotearoa New Zealand

In this essay, drawing on our ethnographic work at the “margins of the margins” in Aotearoa New Zealand, we depict the role of communicative pedagogy for radical democracy in sustaining spaces for community participation in pandemic response. Based on accounts offered by community advisory group members and observations of emergent community spaces of co-operation amidst the pandemic, we suggest that the ongoing work of building co-creative pedagogy for “habits of democracy” is vital to community response. The work of learning to learn together the habits of radical democracy in communities is permanent work that prepares communities for crises, simultaneously building anchors for imagining radically transformative futures.

IRUS-UK: Improving understanding of the value and impact of institutional repositories

>> See video of presentation (21 min.) Many educational institutions have repositories for research outputs. The number of items available through institutional repositories is growing, and is expected to continue to do so due to requirements for outputs from public-funded research to be open access. But how much usage are institutional repositories and their individual items getting?Jisc-funded service IRUS-UK is designed to help institutions understand more about the usage of their institutional repositories. It follows on from the successful PIRUS2 project, which demonstrated how COUNTER-compliant article-level usage statistics could be collected and consolidated from publishers and institutional repositories. IRUS-UK collects raw usage data from participating repositories and processes these into COUNTER-compliant statistics. This provides repositories with comparable, authoritative, standards-based data and opportunities for profiling and benchmarking. It enables institutions to run reports at both repository level (e.g. total download figures) and at item level. IRUS-UK has developed a taxonomy of 25 item types which all items are mapped to so that usage across specific item types (e.g. Article, Book Section) can be consistently compared. IRUS-UK currently has data from 63 UK institutional repositories, and has recorded over 17 million downloads since July 2012. The data from IRUS-UK can be used to provide information for management reporting, for usage monitoring, and for external reporting (such as annual SCONUL statistics for UK academic libraries). Data can be viewed within the online portal, or downloaded for further analysis. IRUS-UK recognises that institutional repository usage statistics may not represent total usage, and is investigating ways to combine usage to support institutions in their overall usage statistics. One development is usage figures for electronic theses and dissertations; IRUS-UK has demonstrated the possibility of consolidating usage statistics from institutional repositories and from the British Library’s Electronic Theses Online Service (EThOS) to show total usage.IRUS-UK is a community-driven development, responding to user needs. User feedback has always been core to the service, and continues to develop with the establishment of a Community Advisory Group. Excellent feedback has been received from users on the ease and speed of set-up, and the value of having consistent, standards-based usage statistics and benchmarking opportunities.IRUS-UK: http://irus.mimas.ac.uk/PIRUS2: http://www.cranfieldlibrary.cranfield.ac.uk/pirus2/tiki-index.php