Monday, May 16, 2016

Seniors Health Roundtable - 11 May 2016, Canberra

The ACT Government has an Active Ageing Framework that sets out the Government’s priorities for active ageing over the next three years. The framework articulates the Government's vision for all senior Canberrans to lead active, healthy and rewarding lives as valued members of our community. One of the guiding principles is the health care is affordable and accessible This means that health services are community based in addition to hospitals.
HCCA had been advocating for a focussed discussion with community members on ways to improve access to health services for older people. We were pleased when the Active Ageing Framework was released and they included an action to convene a round table on health of older people. We participated in the Steering Committee for this round table and our members turned out in force at the event on 11 May 2016.
The round table was opened by Chris Bourke MLAMinister for Seniors and Veterans.
HCCA President, Dr Sue Andrews, spoke at the round table about the challenges in transitions in care. Her speaking notes are included here.



Theme: Transitions in Care – continuity of care across services

I would also like to acknowledge the traditional owners and custodians of the land on which we meet. I respect their continuing culture and the contribution they make to the life of this city and this region. I pay my respects to their elder past and present.

I am very pleased to be here today. The health of older people is one of the health policy priority areas for HCCA. We also have a very active group of members and consumer representatives who are involved in a consumer reference group who identify and advocate for the health of older people in the ACT and surrounding region.  Much of what I say in these introductory comments is informed by their work.

As health care consumers in many different settings, older people are particularly conscious of the frequency and quality of the transitions in care that they experience as they traverse the health system. As well as a general practitioner or family doctor, they are likely to have several other health care practitioners, often specialising in one organ system, disease or condition. They may receive this care in settings such as GP rooms and other private practitioners’ clinics, in a hospital (private or public), in a rehabilitation facility and in a long term facility such as in aged care.

Healthcare delivery is increasingly complex and multidisciplinary, and where the health care system is complex and often fragmented, good continuity of care across services is not always easy to achieve. When it is not working well people may not adequately understand their health problems and may not know which practitioner to talk to when they do have problems and questions. It is vital that older people are supported to access health literacy programs so they can be well informed and participate as much as possible in managing their own health care.

For consumers the challenges for achieving optimal transitions of care across health services relate to having many practitioners, many settings and many rules (eg about where different clinicians can practice, who has responsibility for different pieces of patient information).

Lack of access to health care can also contribute to disruption of continuity of care. Some older people may miss follow up appointments because they don’t have transport to their GP’s office, or need GP care after hours (sometimes resulting in a call to the ambulance to go to the Emergency Dept). They may not see their specialist because they can’t afford it. And they may not know what actions they need to follow if they have not received information that respects their cultural background or is in a language they cannot understand.

The Australian Safety and Quality Framework for Healthcare, under the principle of consumer centred care, identifies improvements in continuity of care as a key area for action. “Continuity of care for patients must apply within the healthcare team as well as between any team and other health professionals”. (p4)

One of the most important things for consumers is that each health practitioner they see is aware of their medical history, their social circumstances and their treatment plan. Lack of this information can cause considerable anxiety and frustration for patients (and the health practitioner) and can cause delays in appropriate treatment, duplication of investigations and even the provision of inappropriate care. (AQSH Framework p5)

Transitions in care for consumers always need to involve efficient and timely clinical handover. “Clinical handover is the transfer of professional responsibility and accountability for some or all aspects of care for the patient…to another person or professional group…Clinical handovers occur at shift change (in hospital), when patients are transferred between health services or wards, as well as during admission, referral or discharge.” (p5) Millions of clinical handovers occur annually in Australia and this is therefore a high risk area for patient safety with consequences that can be serious.

At all points in the process of transitions in care, communication between practitioners and with consumers and their families and carers is very important. Use of both paper based and electronic medical records are critical for handover and transfer documentation, as is working with patients to make sure they have sufficient information and understanding of their treatment to be able to effectively participate in maintaining the continuity of their own care.

Some of the issues that have been identified for discussion at this afternoon’s roundtable about transitions in care include:
·         High quality transitions in care through careful integration of services;
·         Avoiding gaps in care during critical transitions;
·         Effective communication with the consumer, their family, and other healthcare providers;
·         Complete transfer of information – a patient safety issue;
·         On- going access to health literacy for older people and their families and other care givers;
·         Access to essential services and a single point person to ensure effective coordination and continuity of care;
·         Health assessment processes that ensure consumers are supported to achieve the best health outcomes depending on their situation and condition;
·         Unnecessary or inappropriate transfer of residents of aged care facilities to hospital Emergency Departments; and
·         Availability of community nursing and community health services to enable people to return to their homes with appropriate support after discharge from hospital.


For most of us in this room today these are not new issues. So I look forward to our discussions this afternoon which will I hope focus on some innovative solutions for the healthcare system and improved outcomes for older health care consumers in our community.

Sue Andrews, 
President, Health Care Consumers Association ACT.

Monday, May 9, 2016

Report from a Consumer Rep - Online feedback for users, carers and providers

Below is a report by Consumer Representative Bernard Borg-Caruana on a recent session he attended on online feedback for users, carers and providers.

Online feedback for users, carers and providers

This session provided the challenges of gathering and publishing online feedback and recommended ways of increasing the potential of this avenue for users, carers and providers.

Lisa Trigg of the London School of Economics and Political Science presented on online rating and reviews for care providers.

This is in relation to the MyAgedCare website. The presentation for Aged Care  is where the Australian Government is implementing it. However in the UK it applies to all facilities and similar principles apply.

Aged Care covers:  community care, residential aged care and high care facilities.

How can you measure quality and the consumer experience?

Presentation

1. Why is it important?
2. Policy Context
3. Example
4. Challenges
5. Opportunities

Why is it Important?

Online reviews are the new word of mouth that 54% of adult consumers use before making purchases. 

Twitter and opinions empower patients.

We want consumer directed care and empowered consumers

Gravity of the decision

Difficulty of moving between providers

Experience

You can only really assess the service once you have experienced it 

We trust providers.

UK bodies:  CMA + Care Quality Commission (CQC) +  NHS Choices all have a strong interest in this

After engaging constructively with the Competition and Markets Authority (CMA), 2 websites for finding tradespeople, Checkatrade and Trustatrader, and the care home review sites Carehome.co.uk, Care Opinion and Most Recommended Care, have all agreed to improve their practices. These improvements address concerns that were raised following a call for information by the CMA on online reviews and endorsements.

Reviews

The example is often given of Trip Advisor but some excellent lessons from Amazon (particularly regarding Fake Reviews).

Trip Advisor is usually ignored until you’re travelling somewhere where you have no experience: you have to use it.

People go out to dinner and do not review their experience but when selecting a restaurant will look at the star rating.

Some characteristics of aged care settings are “inelastic”:

1. Once you pick a facility you are unlikely to change it; even with bad experiences, a change in care, especially for dementia patients, can be detrimental but social dislocation is a factor for all residents. It is not the same as switching to a new product.

2. The gravity of the decision: How do you know that your loved one would have lived longer or had a happier life at another facility.  This is challenging in retrospect but even more challenging in Prospective decision making.

3. This is not like a diagnosis. You cannot get a second opinion. All care is individual. How can you be sure you have the right care.  

4. Cost of moving—recovering deposits

5. Choice is limited: Availability of services and proximity to the support network.

Residential Aged Care turnover is low and if there is no vacancy. It is unlikely that a consumer will check it out. Could end up with skewed reviews.

Who reviews?

Digital Inclusion reports in Australia and UK equivalent (OFCOM 2013): 

Older people are less likely to be on the internet entering reviews. They spend less time on the internet and few push information 

In Australia less than 10% of Indigenous Aboriginal's have IT access outside cities.

Wisdom of crowds – Surowiecki, 2004

Motivations: Some are altruistic and want to help others make better decisions but others think they can help the providers improve service

How do you know you’re getting a trusted reviewer? Some sites publish a number of reviews performed by a reviewer --- may not be useful in aged care as turnover is low.

Fake reviews— are big business – Amazon is suing publishers and providers of fake reviews.

Fake reviews by providers are a big issue and difficult to manage.

Positive reviews of their business and negative reviews for competitors—See Amazon’s experience

One review in the UK described a facility as excellent; 4 reviews over 3 years said 2 average and 2 terrible; NHS assessment, many areas were average and many below par and is always bordering on being closed down.

Accountability

Laws --- ACCC in Australia – false and misleading claims--  

You can also be held responsible for posts or public comments made by others on your social media pages which are false or likely to mislead or deceive consumers.

Businesses using social media channels like Facebook, Twitter and YouTube have a responsibility to ensure content on their pages is accurate, irrespective of who put it there.

Monitor your social media pages 

Barriers

Access to technology

Sufficient knowledge – technical knowledge to assess all aspects of the facility

Some large organisations may get good average reviews but may have a terrible eg chemotherapy unit ie not all services are the same.

Sometimes the people in the home are not in a position to advise you if they are getting the right care eg dementia patients.

Fear of reprisal and retribution – if you see bruising on your parent in a home ---

For effective review system:  the Government MUST look at defamation laws.

What consumers want:

1. Peer discussion; to meet privately with 1-2 people who had experience with a facility.

2. Stories override rating systems. If someone tells you a story, it often trumps the raw statistics and will sway you.

3. Accountability and reliable reviews

4. Reviews are not a substitute for an effective complaints system and need to be kept separate.

5. Advice to consumers:    Never rely on one source.

Difference in UK

Rating is linked to Pricing:  ie if you have 4+ star rating you can charge above $230 but if you have 3 stars you can charge a max of $230,  etc…

References

Digital Inclusion reports in Australia 

UK equivalent (OFCOM 2013: 

Wisdom of crowds – Surowiecki, 2004

Motivation of Reviewers – Sundaram et al 1998

Ubel 2001

Recognition of Reviewers

CMA report 2016 (Competition and Marketing Authority )

https://www.gov.uk/government/news/online-review-sites-commit-to-improve-practices

https://www.gov.uk/government/speeches/alex-chisholm-on-the-role-of-consumer-enforcers-in-a-changing-environment

By Bernard Borg-Caruana

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’

Wednesday, February 24, 2016

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