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’

Blacktown Hospital Tour

On Monday 15 February Darlene Cox, Kerry Snell and I drove to Sydney to visit the new Blacktown Hospital expansion. Peter Rophail the transition manager for Western Sydney Local Health District organised and provided the tour just two days before the new building was to be handed over. This meant there was lots of activity throughout the building. We are very thankful of the time Peter gave us for the tour.

Blacktown Clinical Services Building

  

Co Design

The project won a gold medal, in the co-design category at the APAC Forum - Asia Pacific’s premier healthcare conference. Western Sydney Local Health District identified that there was a need for strong community engagement in the planning of the hospital. They were wanting the people of Blacktown to own it. Throughout the planning hundreds of consumers where involved through the many methods such as master planning, user groups, focus groups, and getting out to the community and talking to people about what they want.

Consumer engagement was difficult at the beginning as there was not a strong culture of community involvement. Once models were developed to better involve consumers things improved. They learnt by trailing approaches. They were clear about the need for consumer input and were open to making change along the way. For example, while they started out with a single consumer representative on a user group through the process they found that it was better if there was two or three consumers involved in one user group.

How did consumers influence the design?

·         Adequate number of free parking spots for patients undergoing cancer treatment

·         A significant proportion of their inpatient rooms have a carer zone so that carers can stay overnight with adult patients

·         Attractive images on the ceiling for patients in radiation therapy

·         Provision of easily accessible interpreter services for non -English speaking patients

·         Toilets to accommodate patients with intravenous drip stands

·         Consumer was on the panel that selected the 25 large print photographs for the walls throughout the hospital

Core Values

The project included core values that whenever a decision was made the team would referred to the core values and how it supported them. These values are:

·         Mutual Respect

·         Accountability

·         Integrity

·         Teamwork

·         Trust

·         Quality

·         Consumer involvement

Wayfinding 

Furniture Colour for Wayfinding

The new clinical service building uses colour for wayfinding. This is cleverly integrated into the build. This was in response to consumer feedback. One of the consumers said: “a hospital space does not need to be white and sterile”. Every room and every ward had their own colour to improve way finding. The intent is to assist with orientation to wards and inpatient rooms. Their research informed this design decision and it will help patients and visitors to find their rooms. We really liked this approach. The only thing that could be improved is placing a coloured tile next to the sign with the room number. These wayfinding methods are proven to improve the experience for the consumer and it will be good to see how it goes when the building is open.

The Hospital also related all its wayfinding colours to the external colouring of the building, this brightened up the whole space and again made it feel less clinical.

Community Arts Program 

Blacktown Hospital engaged a Canberra based art company called Health Arts Research Centre to improve community engagement in the design, selection and creation of art within the building. This includes an 80 m mosaic, with 13 different works designed by community groups such as Indian elderly and Arabic community groups. There is also involvement from local aboriginal artists Leanne Tobin, who designed The Call Of Home, which is a suspended sculpture of more than 80 unique hand blown glass eels.

The art project also included a photo completion where people could submit their own photos with a chance to be displayed throughout the hospital. The selection panel was a consumer, art specialist and the General Manger. You can find further information on the Arts & Cultural Program here.

The Call Of Home by Leanne Tobin to be
installed in the foyer of the Blacktown Hospital

Example of the large scale photos in public areas

Hospital Street

Layout

The main entrance into the new Blacktown clinical services building comes into a long open corridor called Hospital Street. A lot of contemporary health facilities include a hospital street. This layout makes the environment feel less clinical and more welcoming. It is also very effective way to connect the existing hospital with the new building.

Main Reception

The volunteers will be located at the main reception desk, to better include them within the hospital. This decision was made after feedback form volunteers that they wanted to feel part of a team and be more involved in assisting patients and families.

Off the main reception was lifts and clearly mark stars to the outpatients and inpatient spaces, making for easy wayfinding.

Inpatient Unit

The design includes an additional 180 beds for acute inpatients. These inpatient beds included 65 single bed rooms, three four bedded rooms and the rest being two bedded rooms. The bathrooms where out bound with double doors. All inpatient rooms had glass windows for better line of sight. This was one of the design principles of to see and be seen.

Convertible couch to bed

Eight rooms per ward provided a carers zone where family and carers could stay the night on a couch that converted into a bed and the two bedded room had reclining chairs that converted into beds to sleep on. This meant visiting hours where revised to allow for flexibility. This was feedback from the multicultural community.

Even though the outbound bathrooms reduced light the room it still felt very bright and welcoming.

Patient entertainer system included internet, free to air TV and their Electronic Medical Records (EMR). The TV is on an arm located above the bed, and could recode clinical information such as observations.

Inpatient Single Bed Room

This was to improve line of sight, with the ability to draw a curtain across for privacy.

The design of the nurse station is very open and a significant move away from the fortress we see in most wards. It will invite communication.

Nurses station in the inpatient areas

Nurses station in the inpatient wards

The floor design is to help with dementia and cognitive decline. This is done by guiding people through the space with visual cues as marked out on the floor to help with wayfinding.

QR Code

Defects Liability for the Building

There was throughout the building QR codes that could be used by NSW Health to note any issues with the building before handover. This meant that you could simply use the QR Code in each room to log any issues with the room and it would go on their data base.

Computers on Wheels (COWs)

We went to have a look at a medical ward in the older clinical tower with a 28 bed ward that included six COWs per ward with fourteen charging bays through the ward. The inclusion of an Electronic Medical Record was a key success to the integration and use of COWs. Other new builds that we have previously visited have had issues with COWs and where not used to the full extent.

Computer on Wheels

Paper light

Blacktown Hospital is one of the first hospitals in NSW to go paper light. What this means is that the use of paper documentation for inpatients is reduced and more information is logged electronically, such as the Electronic Medical Records. Currently the inpatient unit at Blacktown is using one page per person per a day, this is expected to reduce even further with the introduction of a closed loop medication system which is coming in August.

The tour provided some fantastic information on new hospital design and how the community is involved in the planning of their hospital. We have taken lots away from the tour and again would like to thank Peter Rophail for the tour and providing use with so much great information.

Nick Wales

Project Officer

Book Review: An Insiders Guide to Getting the Best out of the Health System – Author Kate Ryder

This is an interesting resource, written by a Registered Nurse turned health advocate, who has also worked as a complaints officer at the Office of the Health Care Complaints Commission. The book does not shy away from looking at issues, risks and problems you run across as a health consumer.

Some of the language I think is a little simplistic, and one section goes as far to say that if you treat your health team poorly it is your own fault if they treat you badly and your health suffers as a consequence. I found this a bit concerning. For the most part I think the book is full of really useful checklists, examples and ideas about how to keep yourself safe in the health care system. Well worth a read. I really liked the section about writing a medical history to take to appointments or hospital admissions that you can update.  We have a copy of the book here in the office should you be interested.

You can purchase this book online. 

Eleanor Kerdo

Policy Officer 

Update - University of Canberra Public Hospital

Invitation to the event

On Monday 8 February HCCA staff attended the smoking ceremony and sod turning for the University of Canberra Public Hospital, the new rehabilitation hospital which is being built on the grounds of the University of Canberra. 

HCCA has been very involved with this project. Our involvement dates back to 2010 when we first proposed a sub-acute hospital to the then Minister for Health, Katy Gallagher.

Since that time we have undertaken plenty of research, reading articles, attending conferences, talking to consumers about their experience, and visiting similar facilities in other places. All of this informs the positions we take when we advocate for design of the building - including car parks - as well as the way care will be delivered. 

Yelin Hung, Darlene Cox and Nick Wales at the site of UCPH.

Consumer representatives have participated in User Groups to date. These are groups that bring together consumers and clinicians to consider planning issues. User groups have been focussed on many aspects of the design, including the main foyer, hydrotherapy, pharmacy, equipment loans, medical imaging inpatient rooms, rehabilitation day services and pathology.

An important aspect of the event was a smoking ceremony, to cleanse and refresh the land before construction begins.

Duncan Smoth from Wiradjuri Echoes conducting the smoking ceremony

Minister for Health, Simon Corbell

Following the smoking ceremony, both Andrew Barr MLA, the Chief Minster and Simon Corbell MLA, the Minister of Health spoke, outlining the role the University of Canberra Public Hospital will play in helping improve access to health services for the ACT. The Chief Minister also stated that health is the Government's number one priority. 

Finally to mark the official start to construction of the University of Canberra Public Hospital Andrew Barr MLA, Simon Corbell MLA, Meegan Fitzharris MLA, Chris Bourke MLA and Vice Chancellor Professor Stephen Parker turned the first sod on the site. And yes, there were a few jokes about how many Minsiters and Vice Chancellors it takes to turn a sod.

Handshakes all round for the sod turning.

Work is expected to start in the coming weeks, with the fence up around the site on the corner of Aikman and Ginninderra Drives in Bruce. The site is clearly marked with a banner on the whole external fence.

Work is also continuing on the Final Sketch Plan for the hospital with great involvement from consumer representatives. Last week the consumer representatives that will be involved in the User Groups came along to and induction to have a look at the current plans and what will be involved in the User Groups. It’s fantastic to have so much involvement from our members to help improve the design.

The current date for completion and opening of University of Canberra Public Hospital will is early 2018.

There is more information online, including this video.

Darlene Cox

Executive Director