Patient Voice Initiative

Our Season Two finale, a conversation with Louise Grant, is out now! Click here to listen https://www.buzzsprout.com/2034736/15209450

Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.

Louise also sits on the Board of the Immune Deficiency Foundation of Australia (IDFA) ,which supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any Immune Deficiencies.

Get the simple, easy-to-understand "how-to" of writing a Consumer Comment at our Patient Voice Hub- it's fast, free and easy to use. Click here to sign up in under 5 minutes and head to Topic 1 or Topic 2 https://www.patientvoicehub.org/training/index.cfm?event=user.general.register&secret=6A7BDDD4-B4CB-58B7-387B50192E88C599

Click here to login if you already have an account https://www.patientvoicehub.org/training/index.cfm?event=page.login

For the PBAC agenda with medicines listed and the link to the form to provide input go to: https://ohta-consultations.health.gov.au/pbac/

We have similar topics if you are ever looking for a hand giving input about medical services to MSAC, as well as topics on HTA & Preparing for Technology In the Pipeline.

Patient and consumer organisations, not sure where to start when giving input to the Pharmaceutical Benefits Advisory Committee (PBAC)? This link is for you. In 15 minutes you can cover the basics on our new Patient Voice Hub. It's free. Click here to make an account in seconds, and then head straight into Topic 2 https://www.patientvoicehub.org/training/index.cfm?event=user.general.register&secret=6A7BDDD4-B4CB-58B7-387B50192E88C599
Already have an account? Login here, then select Topic 2 https://www.patientvoicehub.org/

You'll see there are also topics for individuals and for giving input to the Medical Services Advisory Committee, as well as HTA & New Technology in the Pipeline, if you want to come back to explore more!

Is there a promising new treatment in the pipeline? What can you do to get ready? Find out on the Patient Voice Hub - click the link to sign up for your free account now and select Topic 6! https://www.patientvoicehub.org/training/index.cfm?event=user.general.register&secret=6A7BDDD4-B4CB-58B7-387B50192E88C599

"What is HTA?" New Topic available on the Patient Voice Hub!📢 In less than 15 minutes, find out what HTA is, its role in the funding of medicines, devices and medical services, and how you can inform decisions with what you and your community know from living with a condition.
Click below to sign up for free on the Patient Voice Hub and select Topic 5: HTA! https://www.patientvoicehub.org/training/index.cfm?event=user.general.register&secret=6A7BDDD4-B4CB-58B7-387B50192E88C599

New Podcast Episode! A conversation with Claire Devine.
"Some days you deal with it exceptionally well and some days you feel really hard done by. I feel like that’s a normal part of the experience but… I also hesitate to talk about the days I feel hard done by, because I realise that must sound so boring to the people around me.” Listen by following this link, or search for the Patient Voice Podcast wherever you get your favourite podcasts. https://www.buzzsprout.com/2034736/15209453

Do you want to give input about a medicine that is being considered for the Pharmaceutical Benefits Scheme? Not sure where to start? Check out Topic 1 on our Patient Voice Hub. It's free, fast, and in just 15 minutes can guide you through the basics of providing input to the Pharmaceutical Benefits Advisory Committee when you're a patient or carer.

Click here to make an account in seconds, and then head straight into Topic 1 https://www.patientvoicehub.org/training/index.cfm?event=user.general.register&secret=6A7BDDD4-B4CB-58B7-387B50192E88C599
Already have an account? Login here, then select Topic 1 https://www.patientvoicehub.org/

You'll see there are also topics for individuals and for giving input to the Medical Services Advisory Committee, as well as HTA & New Technology in the Pipeline, if you want to come back to explore more!

At PVI we are passionate about creating space for patients to be seen, heard and valued in healthcare decision making. Sometimes that looks like supporting patients with tools and resources and others it means just listening and learning.

This is why our podcast is so important to our work. It creates a space for patients to tell their stories and for our listeners to learn from the diversity, vulnerability and honesty of our guests.

If you or someone you know would like to join us as a guest on our podcast, please drop us an email!
And if you are enjoying our second season so far, you can help us get patient stories into the ears of more listeners by rating and reviewing our podcast wherever you listen!

We’re thrilled to be among the nominees for NGO of the Year at the Health Industry Hub Awards! Thank you for the nomination. If you’d like to support us, you can vote here: https://www.healthindustryhub.com.au/excellence-in-communications-awards-voting-2024/

PBAC's November 2024 agenda is now available.
The companies applying for listing on the PBS have given the PBAC detailed clinical and economic evidence, and now it’s time to add your voice. Consumer Comments are a chance to add input from your personal or group perspective.

You’ll have from now till the 25 September 2024 to get your Consumer Comments in.
Head to our Patient Voice Hub to equip yourself with the 'how to' of making a Consumer Comment https://www.patientvoicehub.org/

LIST OF CONDITIONS ON THE AGENDA:
ASTHMA (SEVERE)
ATOPIC DERMATITIS (SEVERE)
BONE METASTASES
CENTRAL PRECOCIOUS PUBERTY
CHRONIC HEART FAILURE
CHRONIC MIGRAINE
CHRONIC MYELOID LEUKAEMIA (CML)
CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD)
CHRONIC PLAQUE PSORIASIS (SEVERE)
CHRONIC SIALORRHEA
CHRONIC STABLE ATHEROSCLEROTIC DISEASE
COMBINED INTOLERANCE TO COWS' MILK PROTEIN, SOY PROTEIN AND PROTEIN HYDROLYSATE FORMULAE
COMPLEX REFRACTORY FISTULISING, SEVERE CROHN DISEASE
CORTICOSTEROID RESPONSIVE DERMATOSES
COWS' MILK ANAPHYLAXIS
COWS' MILK PROTEIN ENTEROPATHY
DIABETES MELLITUS TYPE 2 (T2DM)
DIABETIC MACULAR OEDEMA (DMO)
DYNAMIC EQUINUS FOOT DEFORMITY
ENDOMETRIAL CANCER (ADVANCED, METASTATIC OR RECURRENT)
ENDOMETRIOSIS
EOSINOPHILIC OESOPHAGITIS
FAMILIAL HETEROZYGOUS HYPERCHOLESTEROLAEMIA
FIBRODYSPLASIA OSSIFICANS PROGRESSIVA (FOP)
GIANT CELL TUMOUR OF BONE
GLUTARIC ACIDURIA TYPE 1
HEREDITARY ANGIOEDEMA (HAE)
HEREDITARY TRANSTHYRETIN-MEDIATED (HATTR) AMYLOIDOSIS
HORMONE RECEPTOR-POSITIVE (HR+) HUMAN EPIDERMAL GROWTH FACTOR RECEPTOR 2-NEGATIVE (HER2-) LOCALLY ADVANCED (UNRESECTABLE) OR METASTATIC BREAST CANCER
IDIOPATHIC PULMONARY FIBROSIS (IPF)
INTESTINAL MALABSORPTION (SEVERE) INCLUDING SHORT BOWEL SYNDROME
LOCALLY ADVANCED (STAGE C) OR METASTATIC (STAGE D) CARCINOMA OF THE PROSTATE
LOCALLY ADVANCED (STAGE III) OR METASTATIC (STAGE IV) UROTHELIAL CANCER (LA/MUC)
MENOPAUSAL HORMONE THERAPY
METASTATIC CASTRATION-RESISTANT PROSTATE CANCER (MCRPC)
METASTATIC PANCREATIC ADENOCARCINOMA (MPAC)
METHYLMALONIC ACIDAEMIA
MODERATE TO SEVERE SPASTICITY OF THE UPPER LIMB
MULTIPLE SCLEROSIS (MS)
MYELOFIBROSIS WITH MODERATE TO SEVERE ANAEMIA
NEUROMYELITIS OPTICA SPECTRUM DISORDER (NMOSD)
NON-FAMILIAL HYPERCHOLESTEROLAEMIA
NON-METASTATIC HORMONE-SENSITIVE PROSTATE CANCER (M0HSPC)
NON-SMALL CELL LUNG CANCER (NSCLC)
OESOPHAGEAL SQUAMOUS CELL CARCINOMA (OSCC)
OSTEOPOROSIS
PHENYLKETONURIA (PKU)
POST-TRANSPLANT CYTOMEGALOVIRUS (CMV)
PREVENTION OF PNEUMOCOCCAL DISEASE
PREVENTION OF VENOUS THROMBOEMBOLISM
PROGRESSIVE FIBROSING INTERSTITIAL LUNG DISEASE (PF-ILD)
PROPIONIC ACIDAEMIA
PROVEN COMBINED IMMUNOGLOBULIN E (IGE) MEDIATED ALLERGY TO COWS' MILK PROTEIN AND SOY PROTEIN
PROVEN INBORN ERRORS OF PROTEIN METABOLISM
PSORIATIC ARTHRITIS (SEVERE)
PULMONARY ARTERIAL HYPERTENSION (PAH)
PYRIDOXINE DEPENDENT EPILEPSY
REFRACTORY FOLLICULAR B-CELL NON-HODGKIN LYMPHOMA
RELAPSED OR REFRACTORY DIFFUSE LARGE B-CELL LYMPHOMA (RR DLBCL)
RENAL CELL CARCINOMA (RCC)
RESPIRATORY SYNCYTIAL VIRUS (RSV)
SEIZURES ASSOCIATED WITH DRAVET SYNDROME
STIMULATION OF FOLLICULAR DEVELOPMENT
SUBFOVEAL CHOROIDAL NEOVASCULARISATION (CNV) SECONDARY TO AGE-RELATED MACULAR DEGENERATION (AMD)
ULCERATIVE COLITIS
UROTHELIAL CARCINOMA (UC)

For the PBAC agenda with medicines listed, as well as the link to the Consumer Comments survey to provide input go to:
https://ohta-consultations.health.gov.au/ohta/pbac-nov-2024/
For the PBAC agenda, go to:
https://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/agenda/november-2024-pbac-meeting

A promising treatment in the pipeline? In just 15 minutes you can find out what you can do to get ready for a health technology assessment when a medicine or medical service of interest is in the pipeline.
Click this link to easily set up or log in to your free account on the Patient Voice Hub and select Topic 6: Preparing for Technology in the Pipeline.https://www.patientvoicehub.org/

What is Health Technology Assessment (HTA)? In 15 minutes you can find out what HTA is, its role in the funding of medicines, devices and medical services, and how you can inform decisions with what you and your community know from living with a condition.
Just click this link to easily sign up or log in to your free account on the Patient Voice Hub and select Topic 5: HTA. https://www.patientvoicehub.org/

"Why don’t we give the best therapies to people when they are first diagnosed so while their bodies are still vibrant and well they get the best treatment as opposed to giving them the best therapy when their bodies are beat up...”

Episode 4 with Geoff Nyssen, out now! Click this link https://www.buzzsprout.com/2034736/15209448 to listen or find The Patient Voice Podcast wherever you get your favourite podcasts.

Geoff has long been a friend to PVI. Living with multiple myeloma, Geoff has experienced a number of treatments and recorded this episode from the USA where he was accessing treatment unavailable in Australia. In today's new podcast episode, PVI Chair Jessica Bean and Geoff discuss his experiences in accessing different treatments, his advocacy work and the cost of treatment delay to patients and his hope to live to 80. We think you will agree that Geoff has an incredible outlook on life.

The Public Summary Documents (PSDs) from the March 2024 PBAC meeting (first time decisions not to recommend and deferrals) are now available, follow this link to view them: https://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/psd/pbac-public-summary-documents-march-2024

The Utilisation Analysis Public Release Documents from the February 2024 DUSC meeting is now available- follow this link to view: https://www.pbs.gov.au/info/industry/listing/participants/public-release-docs/dusc-utilisation-public-release-docs

The Outcome Statement from the June 2024 DUSC meeting is now available- follow this link to view: https://www.pbs.gov.au/info/industry/listing/elements/dusc-meetings/dos

The Health Technology Assessment (HTA) Policy and Methods Review concluded on 4 May 2024. The HTA Review Reference Committee which was responsible for overseeing the HTA Review, held its final meeting on 2 May 2024.

The communique for meetings of the Reference Committee from 1 March to 2 May 2024 is now available. Follow this link to view it on the HTA Review webpage: https://www.health.gov.au/our-work/health-technology-assessment-policy-and-methods-review

How could Australia’s health system support mothers who live with a chronic health condition like diabetes? What does the mental load of diabetes look like? Why is it hard to get funding for research into peer support? These are some of the topics PVI President Jessica Bean discusses with Ashley Ng, a person living with diabetes, researcher and mum in today's new episode of The Patient Voice Podcast.



Bittersweet Diagnosis

Ashley Ng - The Patient Voice Podcast Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conceptio...

The Public Summary Documents (positive recommendations and subsequent decisions not to recommend) from the March 2024 PBAC meeting are now available. Read them here: https://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/psd/pbac-public-summary-documents-march-2024

“We are definitely not the first family to advocate for this, but we want to be the last”

The Patient Voice Podcast Season 2 Episode 2 is out now- listen wherever you get your podcasts or click the link. https://www.buzzsprout.com/2034736/15209425

Kate and her family's work will change the future for babies born with SMA.
Kate Gough is a super mama to her girl gang of three, including Oakley who was born with SMA. In this uplifting episode Jessica and Kate discuss Oakley's diagnosis and their experiences accessing innovative treatment for SMA as well as what they felt desperately needed to change in the Healthcare System in the way babies were diagnosed.

Move For Oakley



Spinal Muscular Atrophy Australia Inc.

Did you miss our webinar? Or maybe you'd like to revisit some of the key takeaways our Patient Voice Partners discussed? 📺 Watch it again here https://youtu.be/IsXa0HKL4hQ?si=QCsOOoPwNeX_LPsy

All of our past webinars are uploaded to our YouTube channel- Check out our Webinars playlist and watch them whenever you want!

Patient Community Takeaways - HTAi 2024 Seville Ann Single, Jessica Bean, Kris Pierce, Melanie Funk & Karen van Gorp discuss patient community takeaways live from HTAi Seville 2024.

“While patient involvement in HTA has progressed, there remains an opportunity for companies to further enhance this from the outset. It is crucial for companies to consider this as they prepare for the HTA process. Establishing a true partnership through genuine engagement ensures that patient perspectives are meaningfully integrated from the beginning.” Kris Pierce, Patient Voice Partner

“Day 2 reinforced that there is the will or intent to have quality patient involvement however systems are grappling with ways to make this happen. We all have a role to play in helping to train and empower patients and patient organisations in HTA involvement.” Melanie Funk, Patient Voice Partner

Hear more reflections from the final day of the HTAi Annual Meeting in Seville and a conference wrap up from our Patient Voice Partners in our webinar this afternoon at 4:30pm AEST.

There's still time to register via the link below! ⬇
https://www.eventbrite.com.au/e/patient-community-takeaways-htai-seville-tickets-920046813787

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Eczema Support Australia Melanoma Patients Australia SCN2A Australia and Asia Pacific

Today's the day! Don't forget to sign up for our free webinar where our speakers will be sharing their key insights and takeaways from the HTAi 2024 Seville Annual Meeting. Click the link to register and join us at 4:30PM AEST! https://www.eventbrite.com.au/e/patient-community-takeaways-htai-seville-tickets-920046813787

Reminder: Register for our free webinar "Patient Community takeaways - HTAi Seville 2024" happening tomorrow at 4:30PM AEST!
https://www.eventbrite.com.au/e/patient-community-takeaways-htai-seville-tickets-920046813787

Patient Community Takeaways - HTAi Seville Ann Single, Jessica Bean, Kris Pierce, Melanie Funk & Karen van Gorp discuss patient community takeaways live from HTAi Seville 2024.

Day 1 of the main conference program at HTAi Annual Meeting Seville saw a packed agenda including many stories and experiences of patient involvement with a focus on sustainability.

Some thoughts from Patient Voice Partner, Melanie:

"Hearing from all perspectives on the barriers, challenges and opportunities for patient involvement in HTA is really motivating me to consider how our local system is working and simple options to support real and meaningful participation for our new and smaller patient group. Today has also brought home the very real emotional impact this calling has on each of us as we try to remain professional in this highly emotive contexts."

The day concluded with a spectacular dinner organised by the HTAi Patient Citizen Involvement Group where colleagues from around the world could share knowledge and experience in an informal setting.

SCN2A Australia and Asia Pacific
Eczema Support Australia
Melanoma Patients Australia

A busy start at the pre conference sessions at the HTAi Annual Meeting in Seville.

Our Patient Voice Partners, Karen, Kris and Melanie, pictured here with Trent Zimmerman and Jessica Bean, have attended sessions with focuses on Rare Disease, non traditional roles for patients in HTA and creating patient focussed networks for innovation and sustainability.

“The workshops have been a brilliant opportunity to meet people and ask questions, I have had many issues contextualised and I am hopeful for Australia.” Karen Van Gorp PVP

"Understanding patients and their preferences has made significant strides. The projects planned for 2024 will offer a comprehensive roadmap for all stakeholders to engage authentically and effectively." Kris Pierce PVP


Melanoma Patients Australia
Eczema Support Australia
SCN2A Australia and Asia Pacific