AccessCR Pty Ltd

It’s published! Patient Engagement Impact Measurement Framework! A practically applicable approach to evaluating and elevating the value of patient engagement to inform medicines development and integration into healthcare! -      The discipline of patient-insights-driven medicines development is an important driver of innovation. Understanding patient insights can and should inform decisions and actions to address unmet needs and outcomes that matter to patients. -      By measuring patient engagement, we can understand where it has the greatest impact. This supports meaningful focus, empowering patient advisors to make a difference and supporting sustainable value generation for the industry. -      Groundwork on measurement has been done by initiatives such as the Innovative Medicines Initiative (IMI) PARADIGM and global Patient Focused Medicines Development (PFMD) projects, and the US Patient-Centered Outcomes Research Institute (PCORI). -      Over the past two years, a collaborative team of external consultants, patient advisors, and cross-functional colleagues built on this to co-create a framework to measure and increase the impact of patient engagement across the medicines lifecycle. -     I have had a positive reception from pharmaceutical companies, patient organizations and supplier companies when presenting elements of this work at ISPOR and other platforms. Now more details are available as promised earlier this year. What this work adds is in summary; A clear, patient community-collaboration-focussed illustration of a logical framework to measure how patient engagement inputs deliver learnings that drive actions, leading to related outcomes and contributing to societal level impact. To be practical, it includes example metrics and measurement tools across medicines lifecycle. Vision of the future By taking measurable decisions and actions informed by the authentic voice of those living with a condition, pharmaceutical research and development organizations, regulators and policy makers can ensure new treatments meet patients’ needs, to improve their quality of life and deliver the outcomes that matter to them. Now if you are someone eager to establish patient engagement/advocacy as a discipline, start measuring, documenting, claiming the impact of it! Why? To support and improve the quality and value of patient engagement, ensuring patient-relevant treatment development! Special thanks to all who made this ambition a reality! And special thanks to those who will now measure their work, you are true change agents championing patient voice! https://lnkd.in/eZuJ4GGR

There has been alot of work over the past couple of decades looking at ways to increase the efficiency and awareness of clinical trials in Australia. Work has begun on a National One Stop Shop for Clinical Trials and Health-related Research. But what exactly is this? We're delighted Dr Bernadette Aliprandi-Costa, Technical Director Clinical Trials Policy Section, Australian Government Department of Health and Aged Care, has accepted an invitation for a chat with health consumers to answer all their questions about this Initiative. For more information, please visit the event link below and register for your opportunity as health consumers to join this interactive conversation.

The fabulous and free online conference for patients by patients #PxP2024 kicks off in less than 24 hours and there is still time to register. Most of it will be recorded. For those of us in Aus, the day 1-2 timings means not getting much sleep, but Day 3 is smack in our timezone so that we can be included. I’ll be filling in as host for the first 3 Day 3 sessions on behalf of Shyamsundar Muthuramalingam, Ph.D. though the session chairs and speakers are doing all the heavy lifting. Then I’ll be panicking at the questions you might ask Anne McKenzie AM and I in the (non-recorded) You Can’t Ask That session ending the conference. I know as of last week there were 75 Australians registered, and with now more than 1000 people registered globally I am sure this number has increased. I look forward to networking with you, no matter what location around the world you are in, online sometime this week to learn and share knowledge and experiences! https://lnkd.in/gmEkDJ7Q Congrats to the conference organisers and steering committee and good luck this week!

📢Register now for #PxP24! A patient-led conference on patient engagement in health research. Click here to register: https://lnkd.in/dUCzt_2r The PxP (For Patients, By Patients) 2024 conference will be September 10-12 (for those in Europe, Africa or North, Central and South America), or September 11-13 (Asia and Oceania). This free, virtual event aims to bring you resources, mentorship and community with patient partners and others involved in health research. Ultimately, our goal is partnering to make research stronger. Full session details will be available soon. Topics will include: • Power balance in patient engagement • Building diversity and capacity in patient partners • How to publish as (or with) patient partners • Interactive ‘ask me anything’ sessions • and much more! PxP 2024 has become a must-attend event, in particular because PxP is specifically For Patients. Although we welcome everyone to join us at the event in September, our key priority will be patient partners and other people with lived experience. We are led entirely By Patients. Every topic and speaker on the PxP conference program has been chosen by our experienced international committee of patient partners. 💜2024 Steering Committee hope statement: To unite, inspire, and empower patients on their journey to health and wellness. May this summit be a beacon of hope fostering community, knowledge, and resilience as we navigate challenges together. Let us stand strong, advocate boldly, and transform research and healthcare for a brighter, healthier future. ----- PxP is committed to help build capacity for patient engagement in health research. Please consider sharing this opportunity with people in your network who may not already be involved in health research (in addition to those who are). Downloadable resources are available here to share: https://lnkd.in/d2MF2sQA #PatientEngagement #PPI #ConsumerInvolvement

Great to see Australian Clinical Trials Alliance offering scholarships for 10 consumers to attend their annual symposium in Melbourne 2-4Dec. The scholarships include complimentary Symposium registration (for days 1 and 2), and for those attending from outside Melbourne, travel and accommodation costs up to $500. To apply for a scholarship, please email events@acta.au, describing your consumer involvement and why you are interested in attending the Symposium, by 13 September 2024. ACTA will then select 10 consumers and advise the outcome by September 27, 2024. #ptinclusiveconf #clinicaltrials #patientengagement #consumerinvolvement #PPI #research #patientpartnership #makeadifference #BetterTogether #patientsincluded