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How can social media help improve palliative care: any suggestions?

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.

Draft presentation

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).

Related Posts

Comments 5

  1. hptns says:

    A friend was involved a couple of years ago in a major study of palliative care. It struck her that a significant minority proportion of those dying at home, were doing so largely alone. Amongst other things, they craved attention from the researchers in order to create social contact. The issue of social contact loomed for them as large as issues such as pain management. The medical support system, however, seemed geared to paying large sums for them to be regularly re-hospitalised, or for professionals to visit, to in part, from the patients view, meet these social needs. It struck her that through the use of social media, including video, social interaction for those who were alone, could in many situations be organized more cost effectively and on a more timely basis.

  2. carolinestorm@iinet.net.au says:

    Melissa Sweet, this may be of no use to you, but I ask you to consider those whose deaths are the most cruel; many of the the long-term seriously mentally, who having watched their lives disintegrate around them, knowing their diseases are intractable to treatment, (incurable diseases of the brain, schizophrenia, bipolar 1 disorder and some some severe affective disorders such as clinical depression) determine their own death, almost always violent and always alone. The WHO has said that the severely mentally ill complete 90% of suicides globally. Anyone who has lived with someone for many years, with such a degenerative disease causing suffering which never ends knows they would
    do anything to help that end. But, as my daughter said to me “If you helped me they’d get you for murder”. So, she went alone onto a train line, and we cannot ever recover fully.
    Please, consider incurable and degenerative mental illness as well as incurable physical illness when considering palliative care and physician-assisted death.

  3. Carolyndv says:

    Glad to see this topic is included in the program! The potential for using social media to engage clinicians, patients, carers and govt is enormous. The conversations are already occurring, especially amongst patients and carers. A search of blogs will lead you down a very long path.u I follow one which continues to surprise me: the level of support and compassion, extremely honest commentary about dying, death and grief, swapping of information about disease, and even discussions about hope and the future. So much more than a phone call can provide! The use of social media to provide timely feedback to palliative care patients and their carers is an untapped resource. It’s not an expensive way to prevent people from admitting into ED about matters that could have been dealt with via a secure SM platform. The need to contribute to on line communities with correct information is also important and this is a role that healthcare professionals can add to.
    The global trend towards receiving information and communicating via portable technology opens up access to everyone: doctors need not be desk bound to consult with their patients, nurses can provide advice and support via micro blogging platforms, test results can be communicated quickly, psycho-social support in your pocket or tablet, and government and policy writers can have access to real thoughts, real experiences and a level of honesty about death and dying and the services provided via
    communities using social media. Education and feedback is just the tip of the iceberg!

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NT Intervention
social and emotional wellbeing
Uluru Statement
WA community closures
News about Croakey
PIJ Commissions 2021
Public health and population health
#PreventiveHealthStrategy
#UnmetNeedsinPublicHealth
air pollution
alcohol
consumer health matters
COVIDwrap
environmental health
Fetal Alcohol Spectrum Disorders (FASD)
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Government 2.0
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Health in All Policies
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Media Doctor Australia
media-related issues
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National Preventive Health Agency
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Web 2.0
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Social determinants of health
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Justice Reinvestment
NBN
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Summer reading 2020-2021
Tasmanian election 2021
Testing Croakey News category 1
The Croakey Archives
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#HealthEquity16
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#IHMayDay (all years)
#IHMayDay 2014
#IHMayDay15
#IHMayday16
#IHMayDay17
#IHMayDay18
#LoveRural 2014
Croakey Conference News Service 2013 – 2019
2013 conferences
Australian Centre for Health Services Innovation Forum 2013
Australian Health Promotion Association Conference 2013
Closing the Credibility Gap 2013
CRANAplus Conference 2013
FASD Conference 2013
Health Workforce Australia 2013
International Health Literacy Network Conference 2013
NACCHO Summit 2013
National Rural Health Conference 2013