Friday, April 1, 2016

Reflections on the First International Health Care and Social Media Summit 1-2 September 2015

Social Media, Fear and Self Interest and the Khumbaya effect

I am still at that stage in my career where an opportunity to be a conference delegate very exciting. When Darlene Cox our Executive Director let me know about this conference I was pretty pumped. Part of my role along with Darlene and Khalia Lee is to manage our online social media presence, one that is steadily growing. As a fervent science communicator, and someone who just digs humanity and social change generally, I thing social media can do some spectacular things. This conference seemed like the perfect place to discuss how social media can level the playing field and give health consumers a space and the right to shape their health services and be heard. We cannot be ignored, because we are vocal, things go viral quickly and we are demanding for health services to participate in social media, this is our turf, this is not the old paternalistic model of health care, this is about us, our needs, our goals, our social media, we are inviting them to engage and they must respond.

The conference was run by the Mayo Clinic a not-for-profit US service provider that is considered to be leading in using technology, the internet and social media to provide patient centred care. It was run with The Australian Private Hospital Association, which to be honest I had never heard of, but purports to advocate for the needs of private hospital providers. We were a small delegation of around 160 with around 6 of us there as consumers. It was chaired by Norman Swan who increasing frustrates me in the antagonistic way he probes willing speakers to engage, dominates time we audience members tries to ask questions and then haggles those who ask questions. But he was well loved by attendees so perhaps I am overreacting.

A highlight for me was definitely Wendy Sue @seattlemamadoc who had obviously read many books on how to give the perfect ted talk. She spoke eloquently about how social media continues to change how medicine is practice, changing the power dynamic and the importance of consumers in the centre. Stating that social media is a tool that allows consumers to have a louder voice in the health care system, soon she said doctors will have to invited into a consumers health care team not the other way around. Social media is another way that consumers can look to determine quality and credibility of a health care service. This allows personalised medicine rather than paternalistic medicine, where we tell the services was questions we want answered, and how to work with us to meet our needs and provide care.

Another interesting session was about making sure that accurate health information is curated in social media. For example the anti vaccination movement get a lot of their power from social media so how can clinicians engage in this space to make sure accurate public health messages are being spread? They talked about a twitter storm where for 10 minutes a group of clinicians would work to flood social media with accurate information about immunisation. It seems that this could be a really power advocacy tool for the consumer movement too, we could do a twitter storm on person centred care, or quality and safety. What do you think?

Another theme of the conference is how do we create safe online communities? Because we know that people use social media is support groups, for example the endometriosis closed group here in the ACT.

I Reflected lots on social media and stories -  one session we talked about how our brains are hard wired to think in stories. So what is your SoMe story?  My reflection is that consumer stories are crucial to creating systemic change in the health system.

Bupa is everywhere. This is my other reflection. Every event I have attended this year Bupa is there. Certainly something for us as consumers to key an eye on.

Another question I had was how do you use comments on Facebook pages from consumers for quality and safety improvement in your hospitals and use some to include consumers in systemic change of the health system?

My biggest reflection on the conference as a whole was on the tension on wanting to use SoMe to get closer to patients and consumers and listen well and the fear that reputation and discussion is not controlled by medical fraternity.  Is it about providing evidence based care, and controlling dangerous medical misinformation, or fear of loss of personal reputation and fear of the power shift towards the consumer being at the centre and in control of care?

I hate the premise that everyone is controlled by fear and self-interest but that certainly seems to be why people come to the table but I want to know how can we harness the fact that they are at the table at all to create systemic change, to use the khumbaya effect and SoMe to lead and change the world.

Eleanor Kerdo, Policy Officer 

Book review: right of reply

We received the following response to our short review of the book An Insider’s Guide to Getting the Best out of the Health System. Our review was on our Newsletter in February and also on the HCCA blog.

Dear Ms Kerdo,

I read your review of my book with interest, and while I welcome the positive comments you made I was a little perturbed by your criticism of the language in my book, the misrepresentation of what I had written in the section of my book titled: Not Treating Hospital Staff Badly, and the incorrect recording of my current and former professional tiles. 

I would be just as ‘concerned’ as you are if any patient’s health suffered as a ‘consequence’ of merely treating their ‘health team poorly’. However, the behaviour I was referencing were things like patients threatening and racially vilifying staff, and sexually harassing and physically and sexually assaulting staff which goes far beyond treating a health team ‘poorly’. Clearly, patients with life threatening conditions would not be discharged, but some patients with less than life-threatening conditions are simply discharged or are arrested by police. Hospitals are unambiguous about how they will respond to such behaviour:

One of the key findings of my 1996 study: ‘The reasons why patients leave the emergency department without being seen by a doctor’ was because patients didn’t feel safe in the area in which they were asked to wait, in the old emergency department of St. Vincent’s Hospital. This was particularly true for female patients.      
I believe that writing a book such as this requires you to take into consideration everyone’s level of understanding, and while the language will be regarded as being a ‘little simplistic’ by some such as yourself, others will still encounter difficulties and these are the very people I hope to reach.

Almost 60 per cent of adult Australians have low individual health literacy’, in that they do not understand information about health care (‘Health Literacy: Taking action to improve safety and quality’ Australian Commission on Safety and Quality in Health Care 2014); thus we still have a long way to go, and is why I wrote the book in the way that I have with a plethora of checklists and illustrations

I still work as a registered nurse, while doing some voluntary work as a Patient Advocate and advocate for relatives in matters before the NSW Coroner’s Office. In addition, I worked as a Senior Investigation Officer and Patient Support Officer rather than as a ‘Complaints Officer’ in the NSW Health Care Complaints Commission. These positions having very different functions.

I thank you for the opportunity to respond to your review.

Kate Ryder

Author of ‘An Insider’s Guide to Getting the Best out of the Health System’