eQC - Advisory Board
Role/Purpose
The role of The Board is to support engagement of CHSR with patients and care partners, and to guide opportunities to establish links with the general community.
The purpose of The Board is to inform the embedding of partnerships between lived experience experts and researchers at every level of planning, delivery, monitoring and evaluation of research, translation and policy undertaken by the Quality of Care research group.
The research team, led by Dr Martin-Khan, value the expert opinions of the Board members, who together will establish strong community collaboration at UQ CHSR for Dr. Martin-Khan’s team, and researchers wishing to work with The Board.
The eQC Patient and Carer Advisory Board is available on an ad hoc basis (by application) to provide a patient and care partner perspective on research and policy to the wider research community.
Scope
The Board will provide advice and feedback to Dr Martin-Khan and her research team, and the wider research community as appropriate, in relation to developing and existing research and policy work. View Terms of Reference (PDF, 212.4 KB). It will:
- Advise on opportunities to include lived experience perspectives in CHSR research projects;
- Review CHSR project outcomes and advise on relevance to patients and care partners;
- Review research protocols and research materials for readability and ease of participation (including sensitivity to personal issues) for the public;
- Advise on other (non-CHSR) projects or policy work as requested, if appropriate and available;
- Highlight relevant topics of interest that could be the focus of future CHSR research.
Any Board member may represent The Board in specific research or policy work at different stages and in different ways as part of the wider body of work connected to The Board. This may include:
- Reviewing research materials;
- Participating in focus groups and advising on specific topics where nominated;
- Being a member of a project reference or advisory group;
- Being a research partner and/or named investigator on a project;
- Playing an important ambassadorial role for public involvement in research.
Process
Specific guidelines for documentation are included with Table 1 in the Expression of Interest (EOI) form, including font size and documentation page length.
The Expression of Interest form should be completed and submitted to chsr@uq.edu.au.
a. The Administrative team will ensure the application meets the Board scope.
b. The Chair of The Board, the Chief Investigator and at least one Board Member will confirm that the task is feasible.
c. Confirmation will be sent to the researcher with information for proceeding with the provision of relevant documentation to The Board, including timelines.
Individual involvement of Board Members will be evenly distributed across the Board to ensure the workload is shared. Given the different experiences of the Board, you can request a particular Board member to review your application, but this may not be feasible. Our best effort will be made to match the interest of the Board member to the project. Researchers will be consulted as part of the nomination process.
FAQs
How is the Board funded?
The Board is coordinated and funded under the quality of care work led by Dr Melinda Martin-Khan. It is an outcome of NHMRC Boosting Dementia funding (APP1140459). If you have any questions regarding the Board or EOI, please email chsr@uq.edu.au.
Can anyone use the Advisory Board for lived experience expert input?
If you need input from a lived experience expert you are encouraged to submit a request. The team will review the request to make sure it fits the experience of the board. You will be notified when your submission is being reviewed.
What if I need an urgent review from the eQC Advisory Board or the Board isn’t meeting in time for my grant submission or work to progress?
A request can be made at anytime and if the Board aren’t meeting, you can ask for a specific review.
What if I don’t have funding to pay for a request?
We encourage you to email chsr@uq.edu.au with your information and the reason you don’t have funding. You may receive a fee waiver depending on your request and your circumstances.
Fees for Service and Expression of Interest (EOI)
# | Service | Description | Fee |
1 | Grant Review at an eQC Board Meeting | Researchers to provide lay summary*, and research protocol (optional). A written summary of The Board’s comments (written by the secretary to the Board) following the Board Meeting will be forwarded to the researchers. | $200 |
2 | Individual grant review by individual Board member | The board member will spend a maximum of 2 hours on the review, including feedback time. Provide lay summary only (Max. 2 pages). Feedback is provided by phone call (or other option at the request of the board member and in agreement with the researcher). | $80 |
3 | Researcher attend Board Meeting. Time allocated (45 minutes) for Board input as focus group | Documentation to be provided prior to the Board Meeting for pre-reading. - Lay summary, protocol (optional), agenda^ for focus group (5 pages max. 14 pt font). Presentation and discussion time during Board meeting. | $350 |
4 | Special meeting of The Board for the purposes of a project (out of session) | Maximum two hours for focus group (with additional time for pre-reading allowed, 10 pages max. 14pt font). - Lay summary, protocol (optional), agenda for focus group. Estimated cost provided. Exact cost will be based on final meeting arrangements. | $1,500 Approx. |
5 | ECR Grant review | CHSR Early Career Researchers (NHMRC definition) One grant application protocol read (in the form of a 2 page lay summary; 14 pt font.) at a Board meeting for no charge. | Free (once only) |
6 | Co-Researcher | Individual Board Members – support research projects If an individual Board Member is requested to join a research project (as a member of a Reference Group, Advisory Group, or as a member of the Investigator team), Health Consumer Queensland remuneration rates apply for meetings and focus groups. - Honorariums are to be paid direct to Board members when connected to specific research projects. Any expenses related to attending a meeting or participating in the project will need to be reimbursed and arrangements agreed in advance. Expense examples include (but not limited to): parking or travel, photocopying or printing. | $187 per meeting (3 hour meeting max.) $187 per forum [Note: $374 per forum (if the agenda indicates forum is over 4 hours)] $40 per hour for grant review [Lay summary] (Maximum 2 hours). |
*Lay summary to include: methodology; implications of research, implementation plans, involvement of lived experience experts, timeline, dissemination and/translation.
^Further details about documentation is included in the Expression of Interest Form (EOI).
Meet the eQC Patient and Carer Advisory Board
Dr Jane Thompson Board Chair |
Jane has a valuable combination of both lived experience of dementia and understanding of the research culture and the research process. She cared for her husband who died of Alzheimer’s disease in 2007. She has past professional training and experience in research (BSc, MSc, PhD, postdoctoral research). She is a strong advocate for the involvement of people with lived experience of dementia, and the wider public, in dementia research and for improvements in the care and support of people with dementia, carers and families. Commencement date: March 2020 |
Dr Leanne Jack Board Member | Leanne has participated informally in dementia advocacy in community care and residential care settings for her husband who was diagnosed with young onset Alzheimer’s disease. She has also participated in community awareness activities for dementia awareness of Younger Onset Alzheimer’s and the needs of other persons with dementia. She has contributed to system changes include sharing of knowledge regarding communication with and interacting with persons with cognitive impairment, chronic health conditions and disability. Commencement date: March 2020 |
Jenni Lawson Board Member | Jenni has lived experience of dementia. She is a passionate dementia advocate and is currently on the Dementia Australia Advisory Committee. Jenni also worked as a Registered Nurse for 36 years prior to her diagnosis, and as a senior Nurse she was involved in many research projects. Jenni has also co-produced two series of podcasts about the lived experience of dementia and has also authored a children’s book to introduce the topic of dementia to children and families as a gentle means to promote discussion. Commencement date: April 2022 |
Elizabeth Miller Board Member | Elizabeth has been a Healthcare Consumer Advisor with Metro South Health, Brisbane South PHN Community Advisory Council, and Health Consumers Queensland for many years. In this capacity she is also working with the Australian Commission on Safety & Quality in Healthcare. Her background training is in Organisational Psychology and she has particular interests in quality improvement, community engagement and research partnerships. She was also the main family carer for her mother who developed dementia in the last years of her life, and during that experience of care identified several areas where healthcare improvements could be made e.g. comprehensive care planning which involves the patient as well as the family members. Commencement date: March 2020 |
Glenys Petrie Board Member | Glenys has lived experience of caring for someone with dementia and is a dementia advocate for timely diagnosis and clear referral pathway. And has also advocated for staffs to be dementia friends. She has been involved in quite a lot of media campaigns for both Dementia Australia and Brain Institute to promote awareness about dementia research. Commencement date: March 2020 |
John Quinn Board Member | John is a dementia advocate having first-hand experience as a person living with dementia. He is involved in a lot of media campaigns for both Dementia Australia and UQ Queensland Brain Institute to promote awareness about dementia research. He has advocated for staff to be dementia friends and has raised awareness about the barriers in language experienced by people with dementia. Commencement date: March 2020 |
Ivy Webb Board Member | Ivy is a member of Consumer Engagement Network for both The Prince Charles Hospital (TPCH) and Metro North-Queensland Health; a guest member of the Delirium & Cognitive Impairment Work Group; Fall Injures Prevention Work Group as well as a volunteer for The Common Good as a Charlie’s Angles in TPCH. She is currently a carer for family member living with dementia and other chronic health issues for over ten years. She participates in monthly meetings; workshops; promotes awareness of delirium; assists in surveys and provides feedback to drafts of upcoming instruction and procedures. Ivy is passion to contribute for better care and support for patients and carers. Commencement date: March 2020 |
Dr Melinda Martin-Khan Chief Investigator | Melinda is a Health Scientist and Senior Research Fellow at the Centre for Health Services Research, The University of Queensland. Her primary research interests are quality of care, factors impacting the care of people with dementia and cognitive impairment, and telehealth. She is the Chief Investigator of the eQC project, and NHMRC Boosting Dementia grant. |
We would like to acknowledge, with gratitude, the greatly appreciated service provided by previous Board Members.
Marianne Smith (Tasmania, Aus) March 2020 – May 2021
Marianne Smith | Marianne had over 35 years working as a Registered Nurse. She has been involved in advocating for patients and consumers particularly in the areas of Renal medicine and dialysis and has supported women and families experiencing breast cancer. She also has personal experience as a patient within the health system both in public and private, in Tasmania and interstate that developed her interest in improving the health system. |
Eileen Jones (Brisbane, Aus) March 2020 – August 2021
Eileen Jones | Eileen has experience of working to advance consumer engagement in a teaching hospital where she was a Chair, Health Community Council and Board member Children’s Health Queensland Hospital and Health Service. Her work influenced arrangement and a focus on family centred care in the hospital and community-based services. She cared for her husband for 11 years following diagnoses of complex illnesses including Systemic Amyloidosis. She has her own substantial experience of the healthcare system including 3 month’s hospitalisation following a cerebral haemorrhage. She has a background in health services research at the University of Queensland, Royal Brisbane Hospital, Queensland Health Research and Planning and the Medical Board of Queensland. She is currently working to support the passage of Voluntary Assisted Dying legislation in Queensland. |