Community and Patient Preference Research (CaPPRe)

🎄 Another Christmas party for the books! Last Friday, the CaPPRe Sydney team wrapped up the year in style with an afternoon of axe throwing, craft beer, and a lively KrysKringle. Our offices will be closed from December 24th to January 6th inclusive. We wish everyone a restful and joyful holiday season. See you in 2025!

✨ Reflecting on 2024 ✨ Thank you to our clients, research partners, community stakeholders, and study participants for making 2024 an incredible year of research. This year, we had the privilege of working on 37 studies... ✔️ Measuring patient and community preferences, experiences and goals ✔️ Estimating willingness to pay for new services, programs, and infrastructure ✔️ Evaluating patient support services ✔️ Ranking priorities of health professionals, and more! We’re already gearing up for an exciting 2025 filled with new research focuses. We can’t wait to share what’s next in the New Year! #patientvoice #communityvaluemapping #preferenceresearch #DCEs

🧬 We're excited to share the results of a project conducted in collaboration with Australian Families 4 Genomics (AF4G). 🖥️ We used a Discrete Choice Experiment (DCE) to explore people's preferences for sharing genomic information in a database or library. 💡 Key findings from the aggregate data revealed that the most important consideration for participants in deciding to share genomic information was whether finding their personal data later is guaranteed, followed by what kind of information is stored and what type of organisation runs the library. Using a Latent Class DCE model, we identified two distinct participant groups with different levels of willingness to share genomic data. Check out the infographic below for more study findings ⬇️ #DiscreteChoiceExperiment #PatientPreferences #Genomics #PatientVoice

Do you have experience interacting with biopharma companies in Australia? Are you a patient advocate, part of a patient organisation, or an online patient community? In 2022 Patient Voice Initiative and CaPPRe undertook the first benchmarking work in Australia to understand how and when patient communities want to interact with biopharma companies. Now, Patient Voice Initiative and CaPPRe are beginning the second round of benchmarking surveys. Our aim is to gain further information to enable us to provide informed-support for the range of ways patient communities choose to interact with biopharma, and to see if and how these interactions have improved since 2022. If you're interested in taking part in the survey, register your interest before the 19th of November by following this link: https://lnkd.in/gdbiU25R We estimate the survey will take 20-25 minutes. Participants will be sent a $40 e-gift card. The survey will close on the 29th of November. #patientvoice #patientvoiceinitiative #carers #patients #HTA #medicines #awareness #advocacy #patientadvocate #patientadvocacy #patientexperience #PatientCare #healthcare #australianhealthcare #australianhealth #HealthTechnology #HealthTechnologyAssessment

Do you have experience interacting with biopharma companies in Australia? Are you a patient advocate, part of a patient organisation, or an online patient community? In 2022 Patient Voice Initiative and CaPPRe undertook the first benchmarking work in Australia to understand how and when patient communities want to interact with biopharma companies. Now, Patient Voice Initiative and CaPPRe are beginning the second round of benchmarking surveys. Our aim is to gain further information to enable us to provide informed-support for the range of ways patient communities choose to interact with biopharma, and to see if and how these interactions have improved since 2022. If you're interested in taking part in the survey, register your interest before the 19th of November by following this link: https://lnkd.in/gdbiU25R We estimate the survey will take 20-25 minutes. Participants will be sent a $40 e-gift card. The survey will close on the 29th of November. #patientvoice #patientvoiceinitiative #carers #patients #HTA #medicines #awareness #advocacy #patientadvocate #patientadvocacy #patientexperience #PatientCare #healthcare #australianhealthcare #australianhealth #HealthTechnology #HealthTechnologyAssessment

A research project is seeking to better understand the priorities and concerns of Australians affected by rare diseases, when it comes to genomic testing. Hosted by Community and Patient Preferences Research (CaPPRe), the online survey is designed to gather insights from the patient community to share with policy-makers. These insights could help shape policy decisions regarding public funding for genomic testing, such as whether a test could be added to the Medicare Benefits Schedule. Participants in the survey must be: ✅ aged over 18 ✅ live in Australia ✅ have or care for someone who has a rare disease. The survey is expected to take about 25 minutes on a computer or large tablet, but doesn’t have to be completed in one sitting. To start the survey, visit: https://bit.ly/3NWGOkY

Tomorrow is part two of the patient-based evidence workshop series with Patient Voice Initiative! The CaPPRe team is excited to be part of this webinar which will cover the following topics: ✔️ PBAC perspective: What should patient organisations consider when undertaking patient evidence projects? ✔️ Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) ✔️ Service Evaluation Research ✔️ Ethical considerations and seeking funding

REGISTER NOW: https://lnkd.in/gAgp6Ud6 Thames Kularatne and Simon Fifer from Community and Patient Preference Research (CaPPRe) will be joined by discussant Mark Morrison to present their research attempting to quantify the monetary value of the entire NSW Heritage catalogue. Join us for what will be a riveting discussion into non-market valuation methods and benefit transfer.

Last day to register for tomorrow's webinar with Patient Voice Initiative! So many great speakers and topics lined up, including: ✔️ How patient-based evidence is different to participation - Ann Single ✔️ The importance of qualitative insights- Jenni G. (CaPPRe) & Clare Stuart (Mito Foundation) ✔️ How do we better include different communities, e.g., with cognitive impairment, into research? - Ann Single (PVI) & Sarah Jay (Dementia Australia) ✔️What patient preferences are and partnering with a patient organisation- Simon Fifer (CaPPRe) & Brent Clifton (NAPWHA) ✔️Wrap up & close - Jessica Bean (PVI) & Cathy Sertori (MC) Click the link to register below ⬇️

Earlier this year, CaPPRe and Patient Voice Initiative hosted a research workshop in Canberra with representatives from over 30 patient organisations. Now, we're excited to bring this content online in a 2-part webinar series starting next week! Don’t miss the chance to join—learn more and register below ⬇️