Quarterly Update - Sept

Updates and Feedback
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Quarterly Update

We have been getting a huge amount of activity on the forum with many users continuing to ask questions about their hepatitis B. This is great and it is amazing to see how actively involved members are in ensuring that this is a safe environment and non-judgmental place for users to openly ask questions and voice their concerns. So far, we have had a very steady growth of pageviews on the forum with our most popular threads being Hepatitis B and Immigration/Visa Issues as well as lab results and their interpretation.

We have formed a new group – Ambassadors – who welcome new members onto the forum and provide support to the community. Thank you to our @Ambassadors for being active in their responses to new members!

Thank you to our @moderators for actively replying on the forum and we appreciate all the hard work you put in to ensure that all our members questions are answered or let them know that it will be answered by an expert soon.

Promotion

  • Continuing to promote the forum all around Australia – to general practitioners, pharmacies and hospitals

Partnerships

  • We are collaborating with Hepatitis B Voice Australia – visit hepbvoices.au to learn more about them
  • We would like to thank Hepatitis B Foundation and World Hepatitis Alliance for their continual support of our community forum and the hard work they put in to ensure that people living with hepatitis B have a safe and supportive environment to discuss their questions and concerns.

Past events

Conferences that we’ve promoted HepBCommunity.org at:

  • International HIV Coinfection/Viral Hepatitis Elimination Conference (21-22 June) – held in Brisbane

  • Hep NSW Dinner (27 July)

  • ACHV/ACH4 press release for WHD (28 July)

  • GCC/Investment NSW Interview (Western Sydney/Vietnam collaboration, 19 June)

  • CC Aus Liver Roadmap and Guidelines (22 June)

  • WHO HQ Informal Expert Consultation on HBV self-testing (6 July)

  • Kirby Institute Seminar Talk (11 July)

Grants that we’ve applied for as partners:

  • MRFF Consumer-driven research grant – Submitted

  • PdCCRS CC Australia– Submitted

  • NHMRC Partnership Project – Submitted

  • MRFF Indigenous Health – Submitted and Rejected

  • NHMRC TRC Loneliness Chronic Conditions - Submitted and Rejected

Get involved! Current and ongoing events

  • Held our 2nd research showcase with the winners being announced soon – if you would still like to read the entries, please visit: Latest Research Showcase 2023 topics - Hep B Community
  • Virtual meet ups will be changed
    • These will be held every 2 months instead of every month
    • We will go based on topics now and an agenda will be provided so if there is a topic you are interested in, then you can sign up to attend
    • I will be releasing a poll on the forum so that you can all vote on topics you find interesting and would like us to discuss.
    • These topics will be discussed in the virtual meets based on popularity and they will all eventually be discussed

ITEM-B

As you have all seen on the forum, we have a survey called Investigating Treatment Engagement and Monitoring among people living with hepatitis B (ITEM-B) aimed at identifying what stops you from getting the appropriate treatment and care you need. We encourage that everyone living with hepatitis B complete this survey as it is a way for us to understand your experiences and be able to improve on hep B strategies and programs.

If you have 15 minutes, please answer the survey - Barriers to Treatment and Care for People Living with Hepatitis B - Members only - Hep B Community - so we can continue to support you via HepBCommunity.org!

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Hi @Mylisa,

The survey from Hep B Foundation says that it is closed.

-Paul

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Thanks for letting me know Paul. I’ll look into it.

Mylisa

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Thanks for the summary, @Mylisa.

I just wanted to flag this with everyone: I know I may not be the most prompt at responding to posts here, but rest assured we are working hard in the background to make HepBCommunity a sustainable venture that helps as many people as we can. And I do read every post that’s written, even if I don’t reply!

Cheers,
Thomas

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Hi @Mylisa,

I am sorry, I didn’t even thank you for the summary in my post. I hope you know how much of a fan I am of yours. I know how much hard work and effort you put into managing this community. It’s a job where so much of that hard work is done behind the scenes to the point that most of the community doesn’t even know how big a difference you have made since you became The Program Manager. You are such a benefit to this community and I never mean to disregard your efforts.

Sincerely,

-Paul

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Thank you, @PuallyHBV! I appreciate it and thank you for sharing your story and experiences with the community.

Mylisa

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