DoctorJessica Roydhouse

Project Total: $20,000; We will work closely with blood cancer and leukaemia survivors, their families, and their caregivers, to understand how we can support them by routinely collecting psychological well-being and quality of life information in routine care. We will ask them about their needs and goals for putting in a system to collect this information. We will also ask them what aspects of their psychological health and well-being should be collected routinely in such a system, when, how and by whom. This data will be collected by established, frequently used methods involving patient, carer and healthcare provider interviews which are then analysed for themes. We will use this data to understand what existing questionnaires can be used to support Tasmanian haematological cancer patients, and what we might need to put this into practice routinely. It will also inform areas of unmet need for psychological interventions for blood cancer and leukaemia patients in the Southern Tasmania health district. Funded by: Cancer Council of Tasmania - Grant - Small Grant Program; Royal Hobart Hospital; University of Tasmania.

Project Total: $72,727; Precision medicine represents an opportunity to make a difference in the lives of families and individuals with hereditary cancer and rare disease. However, not everyone who could potentially benefit from precision medicine are undergoing genetic testing, resulting in inequitable access. Vulnerable populations, including those from rural areas, are at increased risk of this inequity. The overarching aim of this research is to implement a digital health intervention (DHI) (Genetics Adviser) to increase the number of rural Tasmanians that benefit from genetic testing, opening the door to precision medicine. Objectives: Determine the informational needs of rural Tasmanians affected by hereditary cancer or rare diseaseCo-design adaptations to a validated DHI according to the informational needs analysisConduct a Randomised Controlled Trial using a mixed methods approach The goal of this research is to ensure that all Tasmanians with a genetic condition have an opportunity to benefit from precision medicine: targeted therapies and/or clinical trials, and family-based testing of at-risk relatives, which will help improve health outcomes. Evaluation of Genetics Adviser in a rural Tasmanian population will provide information about whether using Genetics Adviser as a decisional aid increases genetic testing uptake, thus increasing the potential for precision medicine; or makes the process of choosing whether to have genetic testing more satisfying. Comparing genetic testing uptake in rural and urban communities will increase the evidence for digital health interventions in the rural setting, as a tool to increase equitable access for genetic testing and precision medicine in all Tasmanians. Funded by: Clifford Craig Foundation - Grant-Research ($72,695); University of Tasmania ($5,261).

Project Total: $133,779; This study aims to examine respondent burden in prostate cancer. Funded by: EuroQol Foundation - Grant ($114,355); University of Tasmania.

Project Total: $668,251; This project seeks to deliver the national Quality of Life technical service for Cancer Australia. Funded by: Cancer Australia - Grant-Open Tender; University of Technology Sydney; University of Tasmania.

Project Total: $781,368; To record and report on cancer incidence and mortality in Tasmania. Funded by: Department of Health and Human Services Tasmania ($781,369); Cancer Council of Tasmania ($50,000); University of Tasmania.

Project Total: $3,423; The CCT have requested that the Tasmanian Cancer Registry (TCR) statistician conduct additional analyses related to the projections that the TCR publish as part of their annual report. Funded by: Cancer Council of Tasmania ($3,423); University of Tasmania.

Project Total: $300,000; The overall goal of this proposal is to improve patient-centred prostate cancer care by implementing sustainable, achievable routine PRO data collection under the auspices of a clinical quality registry using an integrated knowledge translation approach. Funded by: Movember Foundation - Grant-PCOR-ANZ Research Grant ($300,000); University of Tasmania.

Project Total: $78,046; Time-to-deterioration (TTD) analyses have been used frequently for patient-reported outcome (PRO) endpoints in cancer trials, however both methodological and conceptual concerns have been raised about the use of TTD analyses. Specifically, there are concerns relating to 1) the definition of the PRO event, 2) the handling of competing risks such as death and progression. The proposed analyses aim to consider both issues and provide an evidence-based update to guide statisticians and triallists interested in using TTD for PRO data in cancer trials. The analyses will also be conducted using the estimand framework, which has been adopted or is in the process of adoption by regulatory agencies globally. This will position the analyses within ongoing developments. Funded by: Gilead Sciences ($78,046); University of Tasmania.

Project Total: $300,000; Returning to work or staying at work during treatment is an important consideration for men with prostate cancer. Men in rural and regional areas, or who own or work for small businesses, may experience additional challenges. Employers are critical stakeholders who play an influential role in employees ability to return to or maintain work after diagnosis, but little research has been done on their needs. This project aims to identify the needs of rural/regional men and employers, establishing the path towards solutions to address these needs. Funded by: Prostate Cancer Foundation of Australia - Grant - Future Leaders ($300,000); University of Tasmania.

Project Total: $30,000; In Australia, precision medicine is delivering significant improvements in outcomes for several common cancers, yet such innovation for prostate cancer lags significantly behind, particularly in regional areas like Tasmania. As the prostate cancer clinical space embraces this innovation, it is imperative that we seek engagement from the Tasmanian community in the design of our clinical pathways for effective delivery of genetic information. This project will engage with Tasmanian men diagnosed with prostate cancer, their carers/family members and healthcare providers to identify important and acceptable patient reported outcome measure(s) related to genetic testing, which will allow us to develop tools to aide with the delivery of genetic information in the clinical management of prostate cancer. Funded by: Cancer Council of Tasmania - Grant-Small ($30,000); University of Tasmania ($1,953).

Project Total: $128,856; The project aims to understand the usefulness and suitability of a 7-day recall period of a new instrument, the EQ-HWB-S, for carers reporting as proxies in dementia. Funded by: EuroQol Foundation - Grant-Research ($128,856); University of Tasmania ($699).

Project Total: $16,736; The purpose of this project is to assist with the development of guidelines for clinical outcomes assessment (COA), including patient-reported outcomes (PROs). Funded by: Gilead Sciences ($16,736); University of Tasmania.

Project Total: $116,006; The overall goal of this project is to summarise patient preferences for the mode and frequency of drug administration, enabling key stakeholders to understand these preferences across conditions and settings. Funded by: Pfizer Inc - Grant ($116,006); University of Tasmania.

Project Total: $448,222; In Australia, precision medicine is delivering significant improvements in outcomes for several common cancers, yet such innovation for prostate cancer (PrCa) lags significantly behind, particularly in regional areas like Tasmania. This study will undertake the consumer-focused work necessary to design and deliver patient-centred genomic medicine in PrCa. This will ensure we are able predict men at risk of developing aggressive PrCa and identify those men eligible for gene-based therapies. Funded by: Royal Hobart Hospital Research Foundation - Grant-Major Project ($448,223); Donation via University of Tasmania Foundation ($28,000); University of Tasmania.

Project Total: $15,538; The project aims to develop a suite of qualitative tools and PREMs for data collection and reporting for cervical screening Funded by: University of South Australia ($15,538); University of Tasmania.

Project Total: $1,054,260; The goal of this project is to develop, evaluate and apply statistical methods to account for the use of different respondent types in health studies. We will focus on methods to adjust for proxy-reported data of patient health and experience outcomes in cross-sectional and longitudinal studies. The methods will then be applied to datasets in cancer, dementia and geriatrics. Funded by: Patient-Centered Outcomes Research Institute - Research Grant; Brown University; University of Tasmania.

Project Total: $21,142; Precision medicine and the burgeoning use of complex genetic data to inform clinical management of cancer is here. As Tasmania embraces this innovation, it is imperative that we seek engagement from the Tasmanian community in the design of our clinical pathways for delivery. Funded by: Royal Hobart Hospital Research Foundation - Grant-Project ($21,142); University of Tasmania.

Project Total: $3,338; The goal of this project is to develop tools to support trialists in the use of patient-reported outcomes (PROs) in clinical trials. This includes the development of webinars and checklists. Funded by: University of Birmingham Enterprise ($3,338); University of Tasmania.

Project Total: $507,537; The goal of this project is to investigate the characteristics of a global item of patient perception of side effect bother. We aim to ascertain the usefulness of this item as an endpoint for cancer trials by leveraging existing cancer trial datasets where this item and other outcomes of interest were collected. Funded by: Food and Drug Administration (FDA) - Grant - Broad Agency Announcement; Northwestern University; University of Tasmania.

Project Total: $11,998,906; A clinical trials network to enhance treatment access and improve the health of communities across Australia through innovative mental health trials, generating much needed new therapies, lived experience leadership. MAGNET is the first Australia-wide clinical trials network in adult mental health. Funded by: Medical Research Future Fund - Grant - Million Minds Mission; University of Tasmania.

Project Total: $3,787; The goal of this project is to develop user friendly resources and training with regard to the use and reporting of PRO data in trials Funded by: University of Birmingham Enterprise ($3,787); University of Tasmania.

Project Total: $18,017; The project aims to assess the experience of patients with chronic haematologic malignancies, specifically relapsed/refractory multiple myeloma (RRMM) and myelodysplastic syndrome (MDS) and their carers. Although these conditions are treatable, they are not curable and the treatments can impose significant side effects. As they are incurable, patient quality of life and symptom burden and management are important concerns. This study will help us understand the patient experience in these areas, thereby leading to appropriate interventions and potentially better care. Funded by: Royal Hobart Hospital Research Foundation - Grant-Project ($18,017); University of Tasmania.

Project Total: $4,375; The project seeks to develop a database of adverse events and outcomes for patients with non-small cell lung cancer who received PD-1/PD-L1 immunotherapy drugs in Southern Tasmania. As these drugs are increasingly in use, understanding their real-world impact, particularly for patients who would otherwise be trial-ineligible, is important. The goal of this project is to evaluate the incidence and severity of adverse events and important outcomes (survival, disease progression), and compare this based on key patient characteristics that affect trial eligibility (e.g. brain metastases, performance status). This will provide clinically relevant information about the patient experience on these therapies. Funded by: Royal Hobart Hospital Research Foundation - Grant-Incubator ($4,375); University of Tasmania.

Project Total: $13,145; The project seeks to review the evidence relating to screening for liver cancer in primary care. In particular, we will seek to identify barriers and facilitators to screening for both patients and providers. The goal of this project is to summarise the evidence in the field, which can provide a basis for customised interventions to improve screening uptake. Funded by: Primary Care Collaborative Cancer Clinical Trials Group - Award - Training Award; University of Tasmania.

Project Total: $500,000; A five year fellowship provided from philanthropy from the Select Foundation Funded by: The Select Foundation - Fellowship-Senior Research ($500,000); University of Tasmania.