Gavin Finkelstein is President, Haemophilia Foundation Australia
We will be reporting on the 2018 WFH World Congress in Glasgow, Scotland in the September edition of National Haemophilia. Some of our readers will have attended the 2014 Congress in Melbourne, and will be aware of the broad range of topics covered for people affected by bleeding disorders and their treating healthcare providers at Congresses. The 2018 World Congress program included the latest topics and advances in the management and treatment of people with bleeding disorders. Further, it was the perfect forum to foster collaborations, networks, and relationships to transfer knowledge; to learn, share, and problem-solve through discussions amongst delegates from diverse cultural and contextual settings. Patients and families, WFH national member organizations, health care professionals, scientists, researchers, policy makers, and regulators representing the whole community will all be present.
In the meantime I think that many people in the Australian bleeding disorders community will have followed news from the Congress via the WFH website, or perhaps seen some posts on HFA’s Facebook page or Twitter feed.
These days we have generally come to expect immediate communications and a quick transmission of information. We see this in communications from governments, community organisations and of course, privately, in our personal communications.
For HFA and similar community organisations social media can be challenging, even though it is the preferred way for most people in our community to receive at least some of their information. We need to balance our intention to report events and issues as soon as they arise, with our responsibility to provide accurate and balanced information. Sometimes it might take us a little while to verify information or provide sufficient details and to make sure the wording of our communications conveys the right messages.
Things have changed at HFA. We are very conscious of the need to work with social media as one of our routine channels for communicating information, news and events to our community. This is complex work, and we look carefully at how different messages are conveyed, from the short bites of information on Instagram, the links to more in-depth information on the HFA or other websites or videos on YouTube, and the discussions on Facebook, talking with our community about what we are doing and listening to their feedback. Developing social media strategies to be active in the digital space is a dynamic area for us and we value the expertise our staff bring to this. Kassy Drummond, our Health Promotion Officer, is often found working on the best way to communicate messages via social media, and you may have noticed the colourful visuals and short snappy taglines, along with pathways to more detailed information.
We also share the experiences of people in our community as real live evidence of what it’s like to live with a bleeding disorder. We receive a lot of feedback from our community about how much they learn from each other and support each other– this might be through face-to-face peer support groups on specific issues, and where people come together for family and youth camps and conferences.
We are increasingly sharing the personal stories of people in our community on social media. You might have seen some of the new personal stories we released for World Haemophilia Day in April, including the digital stories on the HFA YouTube channel.
Our digital story project is ongoing and aims to capture a range of the personal experiences of people in our community so these can be shared with others. We are grateful to the people who have generously come forward to share some of their experiences, such as what it feels like when first learning of new diagnosis, or the complications of a bleeding disorder, and the importance of community support and information. If you haven’t yet seen these videos, click on the YouTube link under STAY CONNECTED at the base of the HFA website to be directed to the HFA YouTube channel. We will be uploading more of these digital stories on the HFA website over the next few months and will be redeveloping our home page to make these digital stories more prominent – stay tuned!
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