Is your research aimed at developing novel therapies for a debilitating disease?
If so, have you involved any consumers in planning or promoting your research?
Engaging consumers - such as patients, carers, families – is increasingly recognised as essential to producing high quality, clinically relevant research. Specifically, involving consumers in research planning and reporting helps to identify and prioritise the issues that matter most to them. This collaboration can also accelerate the translation of research findings into clinical practice and ensure that the investment of money and resources in the research have a direct benefit or impact on the people you most want to help.
“Who Cares About your Research? - Involving Consumers to Enhance Your Research Outcomes” is an informative and interactive Professional Development (PD) unit which will equip students with effective strategies to identify and engage with patient consumer groups relevant to their research topic.
At the end of the PD unit, the students will be able to:
- develop strategies to identify and engage with patients or advocates for their research.
- communicate effectively with patients or advocates about their research.
- promote themselves and their research effectively to a range of audiences.
Details
- Part 1*: In-person workshop (Seminar / Q&A)
- Wednesday 16 October 3:00 - 5:00pm, TRF (Block R) Level 2, Seminar Room 3
- Credit hours: 2 hrs
- Part 2**: Consumer Engagement. Contact and engage your relevant patient communities utilising the communication strategies acquired in Part 1
- Between 17 October and 6 November (includes 1hr zoom information session. Date/time to be advised)
- Credit hours: 3 hrs
- Part 3***: Written report (2 pages). Detail your experience in engagement with the patient community relevant to your research.
- Due by Wednesday 13 November 5:00pm
- Credit hours: 2 hrs
- Registration link Please register your attendance, by 5:00pm Friday 27 September (Limit 30 attendees)
*Part 1
Part 1 consists of a 2-hr seminar/Q&A workshop which will introduce the audience to an existing and highly effective collaboration between a research scientist and two patient advocates in the field of Ovarian Cancer. Each ~20 min seminar presentation (details below) will be followed by a 15 min Q&A.
- A/Prof Simon Chu (Head, Hormone Cancer Therapeutics, Hudson Institute) is an experienced medical researcher who has established a strong collaborative network with a community of ovarian cancer survivors. Simon will describe how engaging the ovarian cancer community – via social media platforms or participating in organised fundraisers – has enhanced his research outcomes.
- Claire Reaburn, who was diagnosed with a rare form of ovarian cancer over 12 years ago, is an active patient advocate. Claire and husband Peter are active in raising research funding for Rare Ovarian Cancers through fundraising events such as Ride for Research.
- Tasha Amour, whose daughter is a rare ovarian cancer survivor, is the founder and CEO of the charity foundation called Rare Ovarian Cancer Inc (ROC Inc). This not-for-profit foundation initiated the world’s first systematic research for juvenile granulosa cell tumour by partnering with A/Prof Chu’s research group at the Hudson Institute.
**Part 2
Part 2 (3-hrs) requires the students to identify and engage with patient consumer groups relevant to their own research goals using a variety of communication strategies acquired from Part 1. This could include email, Google, or social media to contact and engage relevant patient advocate, hospital, and professional communities. Students will get a chance to provide and receive interactive feedback on their initial engagement via a 1hr zoom session mediated by the convenors.
***Part 3
In Part 3, (2-hrs) each student will create a written report (~2 pages) that details their pathway of engagement with the patient community relevant to their research. In particular, the report should identify:
- their research consumers,
- strategies they found to be effective and/or ineffective for engaging consumers,
- outcomes achieved due to this activity.