Haemophilia Foundation Western Australia (HFWA) represents the bleeding disorders community in Western Australia. We are committed to improving treatment and care through representation and advocacy, education and the promotion of research.
We own a number of social media accounts which we have set up and manage. These social media accounts provide us with an opportunity to connect with the community; to share information, raise awareness and facilitate conversation.
All content posted to HFWA social media accounts must meet our editorial standards. This includes, but is not limited to, being evidence-based, supported by experts, and respectful of privacy. We also endeavour to be respectful of our community – their challenges, history, and current concerns. The content (including text, images and video) undergoes a thorough review process which includes sensitivity reading.
Engaging with the community
By its nature, social media is ‘social’. We welcome and encourage comments and discussion on our social media posts. Our content is designed to be engaging, our goal is to foster a supportive, respectful and welcoming environment. We also are compliant with Australian law. As such, we will act when we see people posting content that is hateful, discriminatory, or sexually explicit or interacting in an abusive or inflammatory manner, by hiding or removing posts and, where necessary, blocking accounts. HFWA reserves the right to remove any comments/posts that spread misinformation or are harmful to others.
HFWA does not endorse any users’ comments other than our own. Comments posted by members of the community may not necessarily reflect the views or opinions of HFWA.
Treatment/medical advice
HFWA does not offer medical advice or have the expertise to review the medical advice posted by others. As a safety measure, any comments that could be interpreted as offering medical advice will be removed. If you are looking for medical advice, please contact your local Haemophilia Treatment Centre: https://www.hfwa.org.au/support-services/treatment-services/
Privacy
HFWA respects the privacy of our community and will at times change names when sharing personal stories to protect anonymity. This privacy also extends to comments on posts. Only the parent/guardian of an underage child can make a post about their or their child’s health status. Posts from others will be removed. If HFWA is concerned that someone has not considered their own or their child’s privacy adequately, we may remove or hide a comment/post on their behalf.
Advertising
HFWA does not advertise or promote the products or services of other individuals or organisations for their commercial gain. Similarly, comments on posts in breach of this will be removed. Repeat offenders will be blocked from our page.
HFWA does not advertise prescription medicines or medical devices, nor do we allow comments advertising these medical products. Australian Government Therapeutic Goods Legislation stipulates that prescription medicines or medical devices must not be promoted to the general public. HFWA also follows the Medicines Australia Code of Conduct, which includes the requirements that:
- The purpose of information about medical conditions and treatments should be educational and should encourage patients to seek further information or explanation from the appropriate healthcare professional.
- The information may include descriptions of the therapeutic category including classes but does not include any reference to a specific prescription product.
- The information should be presented in a comprehensive, balanced and fair manner that does not unduly emphasise particular options or the need to seek treatment.
- The emphasis of the educational information should be on the condition and its recognition rather than on the treatment options. The appropriate treatment for an individual patient is for the healthcare professional to decide, in consultation with the patient, and this should be clearly stated.
- The tone of the material must not be presented in a way that unnecessarily causes alarm or misunderstanding in the community nor stimulate the demand for prescription of a particular product.
Research studies
From time to time, HFWA may be approached to promote research studies. They will refer them to HFA. HFA has a standard assessment process for research studies prior to promotion. Research studies must apply directly to HFA to initiate this process – any comments on social media posts attempting to recruit participants directly will be removed.
Contacting HFWA
HFWA can be reached through private messaging on social media, however these channels are not checked daily and we may be slow to respond. You are welcome to email [email protected] or call HFA on 03 9885 7800.