Palliative Care Australia – which has been active in the news this week – is holding a forum tomorrow at Parliament House in Canberra, as part of its efforts to develop a national consensus statement on palliative care.
Issues on the agenda include:
- a need to integrate palliative care into the broader health and aged care system
- engaging general practitioners much more effectively in palliative care
- education and training of health care professionals in palliative care
- using evidence to guide practice
- extending the reach of palliative care through partnerships between specialist palliative care services and the broader health and aged care sectors
- the challenge of de-stigmatising death and dying in our society
- to normalise death and dying and accepting both as a natural part of life, to plan for it and let family, friends and others know the wishes and needs of the dying person.
I will be joining a panel (with Dr Rhonda Galbally, CEO of the Australian National Preventive Health Agency, and Mr Mike Woods, Deputy Chairman, Productivity Commission) that will be facilitated by Julie McCrossin.
My brief is to talk about how social media might be helpful for palliative care and end-of-life issues.
Below are my rather rushed thoughts for the subjects I am planning to cover (note that I am not “an expert” on either social media or palliative care).
I’d be most grateful if any Croakey readers would like to throw in some suggestions – either post these as a comment below, or email me directly. Apart from anything, you will be helping to illustrate one of the main points of the presentation: the power of the crowd.
1. The power of the crowd
A minor example of how social media can be used to crowdsource all sorts of advice – and provide feedback to services. Last week, I couldn’t find a powerpoint at Adelaide Airport.
And this is Friendorse, an example of crowdsourcing of community expertise and advice (discovered via Twitter).
2. Beyond palliative care, social media is transforming discussions about health care more broadly
For example, the Health Care Social Media Australia and NZ twitter chat group – #hcsmanz
For example, the Hospice and Palliative Management Twitter chat group – #hpm (largely US-based)
3. Reform? It won’t happen without engagement and advocacy
The case for reform (via the Medical Journal of Australia)
4. Telling stories, engaging communities
“People want to tell their stories” – a friend who works in palliative care told me last week.
5. Making a case for social media and palliative care
This presentation on “why palliative care needs social media” is worth checking out. An extract:
6. DIY media
There are more than 30 specialist blogs on palliative care (I suspect most are US-based). Ie the growth of niche publications and niche audiences.
For example, The Palliative-SW Blog from the Social Work Hospice and Palliative Care Network
aims to keep social workers abreast of developments in the field of palliative and end-of-life care.
The Hospice Navigator blog says:
The internet has changed everything that we do both professionally and personally. With the emergence of social media sites such as Facebook, Twitter, Linked In, and MySpace opportunities have been created to engage different social groups and individuals who are looking for information about end of life care. Our attention is being constantly drawn to forums, emails, webinars and videos online for useful information to guide us.
While these discussions may be difficult in an online forum, the value is great and the reach to many populations is significant. Healthcare practitioners in hospice and palliative care must engage readers on the net and provide support and guidance in ways that are innovative and forward thinking.
7. New media opportunities
The changing media landscape offers new opportunities, for example, this initiative from the Public Interest Journalism Foundation to enable community commissioning and funding of investigations, YouCommNews.
Here’s an example of innovative reporting from Canada about end-of-life issues (again, sourced via Twitter).