Our commitment to the patient community
The patient community is at the heart of all the health research we do at CaPPRe. Our team is dedicated to understanding patient preferences and experiences to inform true patient-centred care.
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Our founders, Dr Simon Fifer and Laurie Axford, are actively involved in advocacy initiatives to centre the patient voice in healthcare decision-making.
Simon and Laurie sit on the board and advisory committee of Patient Voice Initiative (PVI).
Simon is also the co-chair of an international subcommittee of volunteers dedicated to incorporating patient preferences into the health technology assessment process, under HTAi's Patient and Citizen Involvement Group (PCIG).
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CaPPRe has partnered with more than 25 patient advocacy organisations across Australia on past and current projects (with many more partnerships overseas!).
The patient community shapes and strengthens our work at every stage, as people with lived experience bring unique expertise that is essential to high-quality research.
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CaPPRe offers research training to patient organisations interested in generating patient evidence.
In partnership with Patient Voice Initiative, CaPPRe has co-facilitated free in-person and online research workshops on patient experiences, preferences, and outcome measures for representatives from Australian patient organisations.
Types of partnerships with patient advocacy organisations
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Examples include:
Generating evidence to support reimbursement of a treatment or medical technology (e.g., evidence to support Health Technology Assessment (HTA) submissions)
Evaluating people's experiences with services offered by your organisation
Measuring patient experience across the healthcare journey to highlight gaps in care
And more .... if you have a specific research question in mind, please reach out to us. We would love to work with you and discuss how we can help you achieve your research objectives.
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If your organisation already has the research design in place, we can provide support with specific technical components, such as survey scripting and hosting, data analysis, or data visualisation. This allows you to lead the study while accessing support with select elements as needed.
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We help organisations develop research proposals that can be used to request funding from pharmaceutical industry groups, government agencies, or other organisations that provide research grants.
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We often conduct research on behalf of pharmaceutical and medical device companies and invite patient organisations to contribute to study design. Their involvement strengthens the quality and relevance of the research. Depending on each organisation’s capacity and interest, contributions may range from full co-design, to reviewing study materials, or providing input at a research design workshop. Organisations also frequently support recruitment by connecting us with potential participants.
If you are interested in learning more about preference research...
Check out the "Getting Started with Patient Preferences" education topic in Patient Voice Initiative’s (PVI) Patient Voice Hub.
This short, interactive learning resource was designed specifically for patient advocacy organisations interested in learning about patient preference research – what it is, how it works, and how it can help strengthen the patient voice in healthcare decision-making. It was written by CaPPRe's Patient-Centred Research Lead, Maya Joshi.