About Us

The Patient Voice Initiative (PVI) is a collaboration between patients (or health consumers), researchers and industry working towards improving the patient voice in the Australian health system. It is an association incorporated in New South Wales, Australia.

A FORUM FOR COLLABORATION AND DIALOGUE

Within a public-private partnership that encourages broad stakeholder participation, including patient advocacy groups and not-for-profits, the pharmaceutical and medical device industry, healthcare professionals, academia and government.

PROPOSE INITIATIVES TO SUPPORT PATIENT INVOLVEMENT

Using the expertise of stakeholder working groups to identify and prioritise key issues and evaluate approaches to enhance the patient voice in the HTA process.

PROVIDE TOOLS AND RESOURCES

For consumers, patients, health professionals, industry and government that support education and the development of new methods and approaches to delivering patient input and patient-based evidence to be used in the regulatory and HTA processes.

Words on blackboard - I am the expert on me.

Our Objective is

To advocate for the inclusion of the patient perspective in the structure and operation of:

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Australia’s health system.

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All aspects of patient care in Australia.

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The development, approval and funding of medical technologies.

By:

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Seeking input from stakeholders including patients, healthcare consumer organisations (patient groups), academics, government departments and officials, healthcare professionals, and healthcare, medical technology and pharmaceutical companies.

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    Undertaking capacity building of patient and healthcare consumer organisations.

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      Doing anything incidental, convenient or conducive to obtain these objectives.

      Jessica Bean speaking
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      Legislation and procedures

      Assurance that the participation of patients and patient groups in HTA will be supported and their input and patient-based evidence considered.

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      Communication

      Create a well-resourced unit to support and develop patient involvement and provide clear contact points and opportunities for dialogue.

      areas of work

      Recommendations to improve the patient voice in health technology assessments (PBAC, MSAC and PLAC) in Australia

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      Training and Guidance

      Opportunities to learn in order to improve patient and patient group capacity to make valuable contributions to HTA.

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      Evidence generation

      Strategic tools and projects to build a robust evidence base about patient aspects, e.g. registries of patient experience.

      our team

      the board

      Jessica Bean

      Jessica Bean

      President and Secretary

      “Innovative new medicines need innovative policy that gives patients a voice about what matters.”

      Read more

      Innovative new medicines need innovative policy that gives patients a voice about what matters. I’m a patient advocate, international speaker, consultant and empowerment coach for young women living with chronic illness.

      My experience as one of the first cystic fibrosis patients to benefit from genetic modulation therapy, gave me an intimate understanding of the emerging challenges faced by patients in the age of personalised medicine. This has inspired a mission to ensure patients and their values are represented in decision making across the health eco system.

      I’ve worked with global health leaders and brands including Bupa, for whom I was a finalist in their 2016 health influencer awards, and sit on The Australian Genomic Health Alliance Community Advisory Group and the Queensland Genomics Community Advisory Group.

      Larie Axford

      Laurie Axford

      First Public Officer, Vice President and Treasurer

      “Patients have the least powerful voice of all stakeholders in the health system…”

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      Patients have the least powerful voice of all stakeholders in the health system and by working with PVI and CaPPRe I hope to help change this.

      I’m a founding partner of Community and Patient Preference Research (CaPPRe) and have been a non-executive director of the Council on the Ageing (COTA NSW) since 2017. CaPPRe specialises in the use of choice-based methodologies to determine patient preferences for health treatments and services as well as community preferences for government and other services and infrastructure. I became involved with PVI in 2015, working on the steering committee that managed the initial conference and seminars in Sydney, Brisbane, Melbourne and Canberra in 2016-17. I was appointed to the board in 2018 at the time of incorporation.

      Richard Vines

      Richard Vines

      Board Member

      “It’s time to act to change the system to benefit all patients equally…”

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      It’s time to act to change the system to benefit all patients equally. As Chair and Chief Executive of Rare Cancers Australia (RCA), I see the inequities in the healthcare system. Resolving them will take good will and action among all stakeholder.

      After study maths and statistics, I had a career as an Actuary and in IT before moving to the not-for-profit sector. In addition to founding RCA with Kate, I drove the formation of the National Oncology Alliance – a not-for-profit coalition of patients, patient organisations, industry representatives and leading cancer clinicians to promote timely access to drugs for cancer patients. I’m the Deputy Chair of the Australian Genomics Cancer Medicine Program, Co-Chair of the National Oncology Alliance, and chief associate investigator on multiple research projects.

      the steering committee

      Jessica Bean

      Jessica Bean

      Chair, Patient Representative

      “Innovative new medicines need innovative policy that gives patients a voice about what matters.”

      Read more

      Innovative new medicines need innovative policy that gives patients a voice about what matters. I’m a patient advocate, international speaker, consultant and empowerment coach for young women living with chronic illness.

      My experience as one of the first cystic fibrosis patients to benefit from genetic modulation therapy, gave me an intimate understanding of the emerging challenges faced by patients in the age of personalised medicine. This has inspired a mission to ensure patients and their values are represented in decision making across the health eco system.

      I’ve worked with global health leaders and brands including Bupa, for whom I was a finalist in their 2016 health influencer awards, and sit on The Australian Genomic Health Alliance Community Advisory Group and the Queensland Genomics Community Advisory Group.

      Hayley Anderson

      Haley Andersen

      Industry Representative

      “I’m drawn to projects where I can make a real difference for patients…”

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      I’m drawn to projects where I can make a real difference for patients because I lost my father to melanoma when he was just 48. As gaps in traditional evidence and the demand for earlier access to new treatments increase, the patient voice will become even more critical. This is why I am committed to the PVI, whose work supports a greater, more meaningful patient voice in decision making about medicines reimbursement.

      As the Head of Patient Advocacy at Bristol Myers-Squibb, I work to bring patient perspectives to company decisions and actively support the patient voice in health decision making. Before joining BMS, I was CEO of Melanoma Patients Australia. I’m passionate about ensuring Australian patients can access the best evidence-based treatments and care available.

      Simon Fifer

      Dr Simon Fifer

      Academic Representative

      “I want to see healthcare decisions be more patient focussed…”

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      I want to see healthcare decisions be more patient focussed. We have the methods available to do this, but we need to work with stakeholders to put them into practice.

      I’m a ‘pracademic’ (practical academic), with a research focus directed at solving real world problems with major societal impact. My specialty is studying human decision-making using choice-based measurement. This research into patient preferences can help build health systems that better meets patients’ needs. In addition to being a founding partner in CaPPRe and Director of Research and Innovation, I’m on the editorial board for the journal The Patient, and regularly present at national and international conferences and publish papers in leading academic journals. I have a PhD in Choice modelling from the University of Sydney.

      Ann Single

      Ann Single

      Coordinator, Committee Member

      “Learning from patients and their families is essential for good health care…”

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      Learning from patients and their families is essential for good health care because even with robust evidence, there can be gaps, uncertainties and assumptions which prevent new treatments being used in ways that offer outcomes that matter to patients. The value of patient knowledge has been discussed for many years, but it’s taking time for everyone in the health sector to embrace it and become confident working with it.

      I have a background in communication and began working in the field of patient involvement in Scotland in 2001. I now Chair Health Technology Assessment international’s HTAi’s Patient and Citizen Involvement Interest Group. I’m also a co-editor of the first book in this field, Patient Involvement in Health Technology Assessment (2017).

      ann.single@patientvoiceinitiative.org.au
      Todd Stephenson

      Todd Stephenson

      Industry Representative

      “Resolving issues in the health sector takes collaboration…”

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      Resolving issues in the health sector takes collaboration which is why I’m committed to a variety of initiatives that bring industry, patients and health consumer organisations together to tackle the challenges. I became a founding Steering Committee member of the Patient Voice Initiatives because I wanted to progress the ongoing discussions and consensus about including the patient perspective in decision making and turn it into real actions which would enable the patient voice to be heard.

      I lead Janssen’s Corporate and Government Affairs team for Australia and New Zealand and have an interest in patient preference research, including providing training, and promoting diversity. I’m also on the Steering Committee of the Health Technology Assessment international’s Patient and Citizen Involvement Interest Group (PCIG).

      Kate Vines

      Kate Vines

      HCO Representative, Committee Member

      “I see my role as keeping the patient front and centre of everything we do…”

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      I see my role as keeping the patient front and centre of everything we do, fighting their corner for them when they’re sick, and maintaining our own high standards of patient care, which is reflective of the Patient Voice Initiative’s mission and focus.

      Before my diagnosis of Medullary Thyroid Carcinoma in 1991, I had a long career in marketing. I’ve been Head of Patient Care at RCA since Richard and I founded the charity in 2012. I’m active in initiatives across the cancer and genomics community including as an associate investigator in trials and research projects. I’m a member of the National Oncology Alliance and COSA Rare Cancers Group, and provide mentoring and coaching for developing patient groups in the Asia Pacific region.

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      Our work began in 2015 when people from industry, academia, health professionals and patient groups came together to discuss methodologies and approaches for eliciting the patient perspective on the value of medicines. As a result of these meetings, a conference called Room with a Patient View was organised to increase patient engagement in health technology assessment (HTA) in Australia. Following the conference, a steering committee was formed to action items generated from the workshops. In 2016, the group became known as the Patient Voice Initiative to reflect the desire and motivation of stakeholders to grow the presence of the patient voice in HTA used by Australian bodies such as the Pharmaceutical Benefits Advisory Committee (PBAC), Medical Services Advisory Committee (MSAC) and Prostheses List Advisory Committee (PLAC) for the reimbursement of new drugs, devices, procedures and prostheses. The Patient Voice Initiative formally registered as an Incorporated Association in NSW in March 2018.

      Patients want to be involved. Patients need to be involved, and patients are more informed now than they have ever been. Never has there been a more important time than now to have a more inclusive and consultative environment to ensure that the people of Australia are cared for, listened to and part of the conversation.

      – Kathy Gardiner, metastatic melanoma patient

      We’re committed to making training and support available freely to all patients and patient groups who wish to improve their voice in decision-making in the Australian healthcare system. To this end we gratefully receive sponsorship.

      To date we have relied on multi-pharma funding and in-kind contributions.

      Ongoing in-kind contributions

      Cappre logo
      Rare Cancers logo

      2018-19 workshop sponsors

      Janssen Logo

      GOLD SPONSOR

      Bristol Myers Squibb logo

      GOLD SPONSOR

      MSD logo

      GOLD SPONSOR

      Pfizer logo

      SILVER SPONSOR

      Eli Lilly logo

      GOLD SPONSOR

      sanofi logo

      GOLD SPONSOR

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