Partnering with Consumers

One of the workshops I attended at the Australasian Conference onSafety and Quality in Health Care in Cairns earlier this month focussed on how to help health services to take up the challenge of partnering with consumers to ensure they comply with the ‘Partnering with Consumers’ Standard within the National Safety and Quality Health Service Standards (NSQHSS).

‘Partnering with Consumers’ is Standard 2 of the 10 NSQHSS.  It is a particularly important Standard because it provides the framework for active partnership with consumers by health service organisations. It is also one of the most challenging for many health service providers, because it is overarching and applies in conjunction with Standard 1, ‘Governance for Safety and Quality in Health Service Organisations’, in the implementation of all other Standards.

Consumer-centred Care is also the first of three core principles for safe and high-quality care as stated in The Australian Safety and Quality Framework for Health Care. This means providing care that is easy for patients to get when they need it; making sure that health care staff respect and respond to patient choices, needs and values; and forming partnerships between patients, their family, carers and healthcare providers.

The workshop was led by Karen Luxford, Director of Patient Based Care at the Clinical Excellence Commission (CEC) in Sydney, and Nicola Dunbar, Program Manager at the Australian Commission on Safety and Quality in HealthCare with responsibility for a range of program areas, including the deteriorating patient, primary health care, and patient-centred care.

In 2012, the CEC adopted an organisation-wide policy to proactively include principles of patient-centred care within the CEC, to ensure a consistent approach to consumer engagement.

Consumer Advisors were recruited in September 2010 and matched by interest and relevant experience to CEC programs and projects.

Evaluation was through a case-controlled qualitative survey in November 2011.  105 participants were divided into four groups – CEC employees, CEC consumer advisors, CEC working group members and CEC event attendees.  Participants completed a questionnaire anonymously online.

Interestingly, the top three potential barriers identified by participants were as consumer advisors being ‘disregarded as not a health professional’, ‘having an axe to grind’ and ‘lack of clinical knowledge’.

The following headings cover some of the challenges reported by both patients and clinicians.

Communication

Good communication was often found to be lacking. Patients reported not having access to medical staff when things were going wrong; and when the patients knew something was wrong – they were simply not listened to and, if they were in pain, they were just given pain killers to mask the symptoms.

This comment from a consumer, who was told by a nurse that she understood exactly what he was going through after hitting his finger with a hammer, illustrates the point:

‘You can watch someone hit their finger with a hammer a hundred times but until you experience what it’s like yourself you really don’t know what it’s like to hit your finger with a hammer.’

Concept of Consumer

Many clinicians have difficulty with the concept and do not like the term. Some feel there needs to be a focus on the patient and a differentiation of their needs in comparison to family and carer’s needs.  They feel the use of the word ‘consumer’ distorts this.

Concept of Partnership

The concept of partnership refers to a two way relationship characterised by trust and respect and open communication and varies depending on the context. Karen Luxford and Nicola Dunbar acknowledge that this raises the power differentiation between clinicians and patients. The term partnership, as used in a legal concept, refers to sharing responsibility which is not the case with health. The responsibility lies firmly in the hands of the clinicians.

Evidence of the benefits of adopting Patient-Centred Care

In recent years, a number of studies show distinct improvements in hospitals’ uptake of a patient-centred care approach. In one study a comparison was done between two hospital outpatient units - one adopted a patient centred care approach and the other did not; results showed the first had shorter stays and therefore lower costs. Additional positive findings from these studies included significant operational benefits, more satisfied staff, higher staff retention rates, decreased costs, fewer medication errors and adverse events, and improved patient compliance.

Engagement in Governance

It is important to involve consumers who have had direct experience with the health service.  Consumer representatives must be comfortable and briefed so they can speak up at committees. Consumer representatives play a vital role in contributing to quality improvement processes and it is important that they are respected and valued in committee work, otherwise the engagement is tokenistic.

As the only consumers attending the workshop, we drew attention to the role of consumer peak organisations, explaining their important role in support and training.

Unexpected benefits of consumer involvement in governance are that consumers can see the problems more simply and are often solution focused. Standard 2  has been found to be the least met standard because it is seen as being a bit ‘out of the box’. Australia could do well to follow one of the policies in United States health system, where health service providers lose 2% of their Medicare reimbursement if they fail to publish their consumer data.

The Australian health system needs to shift its focus from accreditation to adopting an ongoing process of quality improvement that is responsive to patient needs. Clinical handover, the deteriorating patient, infection control are all part of this process.

How do we measure how we are making a difference

Audit tools currently focus on quantitative data; it is important to think about ways to gather qualitative data.

Conclusion

The need for ‘partnership with consumers’ in governance and care is growing and the role of patients and carers in safety, models of care, program design and review of the organisations performance is key to the establishment of effective partnerships with health service managers and the clinical workforce.

Karen Jameson

HCCA Policy Officer

“I thought I would die from it”: pressure ulcers: the impact on patients’ lives

At the beginning of September we attended the 10th Australasian Conference on Safety and Quality in Health Care, which was held in Cairns.  The three day conference was a fascinating and informative mix of plenary sessions and abstracts, providing the opportunity to hear messages from national and international experts about what they have achieved in the area of Quality and Safety.
We thought we would share with you one of the sessions which we found particularly powerful and interesting.  It was presented by three staff from Western Health Victoria and demonstrated the enormous impact of digital story-telling in bringing about change to dramatically improve outcomes for patients and clinical staff.

The Western Health team had developed a toolkit which sought to provide a comprehensive communication package for staff to support an organisation-wide campaign to achieve behavioural change in relation to the prevention of hospital acquired pressure ulcers.

Pressure ulcers are one of the top five issues for patient safety.  They are preventable; but failure to properly treat and manage them is likely to result in pain, disfigurement and deconditioning and, in the most serious cases, lead to amputation and even death.

The team used digital storytelling to relate the experience and impact on the quality of life of two patients (and their family and carers) after they sustained grade four hospital acquired pressure ulcers.  Grade four is the most severe category of ulcer and is defined as “full thickness skin loss with extensive destruction and necrosis extending to underlying tissue”.

A DVD formed the centrepiece of the toolkit, which included broader training and presentations.  It also included promotional materials, images of staff taking pressure ulcer prevention measures, evaluation forms and key message items, such as badges and pens.

Participating staff were also asked to complete an open-ended questionnaire, both before and after the educational sessions, with follow-up (including staff opinions of the DVD) at 3 and 12 months. Qualitative and quantitative data was used to measure the impact.

The interim results were very good and demonstrated a real change in staff behaviour.   They described the toolkit as excellent, powerful, moving, confronting and thought-provoking.  A high proportion of staff said they were more vigilant about skin assessment and were focussing on bedside handover and increased sensitivity to patients’ reports of pain.

We watched and listened to the section of the DVD containing the stories told by the two patients; they were moving and distressing in the extreme.  One of the patients said “I thought I would die from it”, because she was in such pain.

The DVD’s greatest value was to trigger behavioural change as a result of the powerful and poignant stories presented.  Involving patients in storytelling in a non- blaming way had enormous impact across the organisation in relation to pressure ulcers and raised multidisciplinary awareness of preventative strategies.

The DVD also led to improved care after discharge from hospital.   Patients discharged after acquiring severe pressure ulcers had an alert placed on their medical records and were issued with an “at risk” card identifying specific strategies required, for example, ensuring appropriate seating is provided - ie comfortable chairs and cushions, when triaged in the Emergency Department.

For us, the key messages from this really worthwhile project and toolkit were: it is vitally important to listen to the patient; storytelling delivers more than just facts - it brings issues to life and aids change; you need commitment and buy-in from all health disciplines to achieve positive change and real improvements for all in health care.

In this case, the moral of the story is “Pressure weights for no-one”.

Kerry Snell and Karen Jameson

Alcohol, Tobacco and Other Drugs Association (ATODA) Election Forum

On 11 September I attended the ATODA Election Forum.  It was an interesting forum, with interesting speakers and presentations.  This is a brief outline of issues raised and discussed.  Members of the ACT Legislative Assembly attending were Ms Katy Gallagher (MLA, ACT Chief Minister and Minister for Health), Mr Jeremy Hanson (MLA, ACT Shadow Minister for Health), and Ms Amanda Bresnan (MLA ACT Greens Health Spokesperson)

The session was Chiared by Justice Richard Refshauge

Justice Refshauge spoke about:

• the damaging consequences of secondary harm, particularly its effect on families.

• 95% of work in courts resulted from use of ATOD

• looking closely at evidence was particularly important, in context of policy development, because evidence is not always intuitive

• importance of ATOD education in schools

• problems of alcohol related violence

Implementing evidence based school drug education

Associate Professor Richard Midford (Centre for Indigenous Australian Education and Research at Edith Cowan University)

• young people are a particularly vulnerable group

• education in schools especially effective, because they are a captive audience

• importance of “inoculating” children before they become “attractive”

• it’s cost-effective – prevention far cheaper than cure

• alcohol is by far the biggest problem among 14-15 year olds, followed by tobacco

• 75% of high school children have tried alcohol by age 13

• 41% are current drinkers by age 17

• 7% of 13 year olds drink in a manner causing risk

• research is important, but Australia needs its own research,and not rely on research from USA and UK, which is often not relevant to Australia

• Australia has good reputation in research based on harm minimisation – much of it is exported overseas

• cognitive/group learning methods are good, but teachers must be properly trained too

• important not to focus on changing attitudes, because this isn’t necessarily linked to changes in behaviour

• a Drug and Alcohol Education Program (DEVS) will be rolled out across schools in Victoria from September 2012.  The program for Years 8 and 9, was developed as a partnership between the Department, Edith Cowan University and the Youth Research Centre at Melbourne University and won the Excellence in Prevention and Community Education Award at the National Drug and Alcohol Awards on June 22 

• DEVS is based on thorough research and evidence. It’s a good initiative, because Australia does not do well at setting up ongoing drug school education. The results show it improves students’ knowledge and decision-making, increases communication with parents and reduces risky drinking. Students learn about the effects of drugs and alcohol on the body, the social pressures that encourage alcohol and drug use, and practical skills that help them to avoid drug use and how to remain at low risk of alcohol harm

• DEVS didn’t convince participants to stop drinking, but did lead to a reduction in amount of alcohol consumed and subsequent harm.

Effective policy responses to alcohol and related violence

Mr Tony Brown (NSW Community Campaigner for the reduction of alcohol related violence)

• this presentation focussed on Newcastle

• violence is concentrated around licenced premises

• alcohol related violence had been reduced by 37% in Newcastle as a result of restricting licencing hours

• Proust’s words – “The voyage of discovery lies not in seeking new vistas, but in having new eyes”, highlights the disparity between evidence and what’s actually happening on the ground

• ACT and NSW have a balanced approach to the problem

• most harm resulting from alcohol consumption is unintended injury (eg falling over/hitting head/traffic accidents)

• less than half injuries resulting from alcohol consumption is criminal

• the 2008 Intervention in Newcastle was one of the most successful programs in reducing harm caused by alcohol consumption

• responsible service of alcohol, reducing trading hours and hotel density are key and has overwhelming community support

• the methods the alcohol and hospitality industry have advocated have not worked

• a level playing field -  an apolitical, bipartisan approach needed

Addressing tobacco and disadvantage

Mr Ray Lovett (Australian Institute of Aboriginal and Torres Strait Islander Studies and National Centre for Epidemiology and Population Health, ANU)

• 11% of people in ACT smoke

• various strategies to reduce/quit smoking discussed – group therapy is most effective (2.4 times more likely to quit); individual therapy (1.2 – 1.6 times more likely to quit); similar ratios for telephone and motivational incentives

• screenings by health professionals are good, but not conducted frequently enough

• social marketing and media campaigns effective

• where to focus efforts? – justice system; blue collar sector; unemployed; Aboriginal and Torres Strait Islanders

• every dollar spent on tobacco control delivers an overall saving of $1.30

Q&A Panel Session

What ideas does the panel have to ensure consumer participation is embedded in drug treatment?

Comments included:

• There must be a balance between evidence and reality on the ground.  Consumer voice is important, but there must be a compromise between the solution and meeting consumers’ needs.  Important to listen to consumers and include their views in health policies.

• If consumers are involved, you get a better outcome.  ATOD consumer participation is an area that needs development/encouragement and ATODA is working on this.   Depends on the area – eg consumer participation in surgery is poor.  ATOD, as a unit within health, will improve.

• Training for consumers is vital.  There is an excellent opportunity to build a good model of consumer participation in the ATOD sector through ATODA working with HCCA to build that model.

What is the panels’ views on holding young people in the Watch House?

Comments included:

• Watch House is a last resort.  It’s really a sobering up facility.  Ideally it would be good to have another facility specifically designed for children.  However, this isn’t necessarily easy/practical in such a small jurisdiction.  Agreed young children have range of needs and important to get the model right.

• The correct setting for young people depends on the individual/circumstances/behaviour.  Sometimes, the Watch House is a suitable place.

• Greens support expanding facilities for young people.  Very important to prevent children becoming involved in youth justice system.  Definitely should be separate service for young people.

$4 million was allocated for random roadside drug testing, but there is little evidence to show that it has been effective.  Would the panel support implementing an evidence-based social marketing campaign? And would the panel support a formal evaluation of the program?

Views differed on efficacy of the program. 1 in 60 people in Australia drive while under the influence of drugs and in ACT it is 1 in 40.  Effective marketing of the program is needed.  Currently the program is in its infancy, but doing well.  

There will be an awareness campaign in 2013 and the Road Safety Trust will do an evaluation.  As the police become more familiar with policy and procedures, costs should be reduced.

What are the panel’s views on the second Australia 21 Report?  Does it agree with one of the outcomes of the recent meeting that there is a need for National Summit on the topic and a referral of the issue to the Australian Productivity Commission?

Comments:

Ranged from disagreement with Australia 21and believing there is no need for referral to the Australian Productivity Commission (APC), to welcoming involvement of APC, because, this would remove politics from the process.

What are the panel’s views on flexible payment options for vulnerable people/groups?  What about people who are fined who cannot pay?

Comments:

• Policy work is being done on this.  Issues need to be dealt with other than by handing out financial fines.

• Balance needed here.  Fines and penalties are there for a reason.  Often they achieve their objective as acting as a deterrent.  But agrees there is no point in fining people who cannot pay.

Is there capacity for more young people to have their problems addressed by the health, rather than the justice system?

There was unanimous support from all parties on this one.

Evidence shows outcomes for young people and the community are better if young people avoid the criminal youth justice system.

Policy needs to be tailored to specific needs.  The availability of alternative programs is important.  

Karen Jameson

Policy Officer

Population Health Congress – Conference Report

The Population Health Congress took place on 9 – 12 September 2012 in Adelaide.

The SA Health Minister, John Hill, spoke on the first day.  I always find these presentations interesting as we get a sense of the increasing demand and the big decisions governments have to take in allocating resources.

A few points about the South Australian health system:

• The SA Government spends 28% of the state budget on health with growth funding at 9%. If this continued without the agreements with the Commonwealth then the entire state budget would be spent on health by 2032.

• Demand for services is increasing and one of drivers of the demand are varied, including the ageing of the population and higher incidence of complex and chronic  conditions.

• Smoking rates have lowered from 37% in  1974 to 19% in 2007

• Obesity: 25% of children aged 5-17 years are currently overweight or obese.

• Cancer, heart disease, obesity, infertility, sleep apnoea can be attributed in part to lifestyle decisions.

As we age we are more likely to require hospitalisation in any given year.  Over the age of 65, we are twice as likely to need a hospital bed in the next year, and when we are over 85, we are five times more likely to need a hospital bed.

Core to changes currently underway in the health system is the focus on public health and improving primary health care. Lifestyle and behaviour change are increasingly important factors to improving the health of the community.  Minister said that the key to this is for people to understand that we have responsibilities to improve our own health.  Now at times the use of ‘responsibilities’ is also involved with shaming and blaming people for our ‘lifestyle’ decisions without consideration of the social determinants of health. 

Health inequalities result from social inequalities. Action on health inequalities requires action across all the social determinants of health.

This is where the SA Government has got it right.  The Minister acknowledged that good public health requires a comprehensive approach and if we leave health care to the health sector we will not achieve the goal of a healthy community. South Australia leads the way in the public health field with the adoption of the Health in All Polices (HiAP) and was described by one speaker as being the perfect union of understanding and action

Minister Hill outlined one of the programs that the SA Government has funded to address obesity rates in particular communities. OPAL (Obesity Prevention And Lifestyle) started in 2009.  It is based on a French program that was conducted in two towns (EPODE).  The results were that a whole-of-community approach could have a major impact on turning around childhood obesity.

The plenary sessions were excellent. A few of the highlights were:

Global health, climate and economics: What is the impact of change? - Richard Horton, Editor of the Lancet

Public health engagement in trade policy: Lessons from the Trans Pacific Partnership Agreement  - Professor David Legge, Scholar Emeritus, School of Public Health and Human Biosciences, La Trobe University and Deb Gleeson, Lecturer, School of Public Health and Human Biosciences, La Trobe University

Aboriginal health in a changing world - Jonathan Carapetis, Director, Telethon Institute for Child Health Research

The Spirit Level: Why equality is better for everyone - Professor Richard Wilkinson, Social Epidemiology, University of Nottingham - Via video link

Indigenous health – modern myths and legends - Professor Papaarangi Reid, Head of Department of Maori Health, Faculty of Medical and Health Sciences, University of Auckland

The questions from the floor are sometimes the best bit of conferences.

One of the questions from the floor was asking how to change the culture of the public service so that bureaucrats are thinking about people, rather than focussing on water, transport, electricity and other assets and investments. There was a sense that shifting the thinking is a big step. There was acknowledgement that government departments involved in human services are already thinking like this. Concern was expressed about the environmental and economic agencies who seem not to be thinking about people but focussing on assets. There was agreement that by couching planning issues in terms of equity and access that we can orient that work of the economic, planning and environmental areas to understand how the work they do informs the overall wellbeing of the community.

Overall I felt a little flat after the Congress. It is not just the enormity of the change that needs to take place but also a sense of an opportunity lost. Certainly there is great benefit in bringing together the epidemiologists, health promotion and public health groups and there was a fair degree of celebration on what has been achieved and optimism about how we can improve the health of our community in the face of significant challenges.  It is also good to see so many young professionals with the opportunity to conduct research and present at the conference. 

Consumers seemed to be invisible in many of the papers. While I saw some excellent research it was about us and rarely did we seem to be identifying the research projects and scoping the objectives.  I would like to see our public health colleagues partner with consumers at the system level rather than focus our involvement at the individual patient or local community level.

There was great potential to harness the expertise and willingness in the room to identify some priority areas that we could work on.  For example, I think there is great scope to elevate the profile of the public health agenda in the work of Medicare Locals.  From what I learnt, Medicare Locals are well funded and can be using that to build relationship with the community and to progress the pubic heath agenda. At the national level there are partnerships developing between the players.  I would like to see statements that we can use at the state and territory level to move this on. A renewal of the Adelaide declaration would have been very powerful.

Still, a very useful conference and it has given me lots of things to think about.

Darlene Cox

Executive Director

Gungahlin Community Health Centre

HCCA has been funded by the ACT Government to provide consumer input into the Health Infrastructure Program.  The HIP Team is Kerry Snell, Heather McGowan and Yelin Hung. the team had a tour of the new  Gungahlin Community Health Centre at the beginning of September.

A Ngunnawal elder and his children conducted a smoking ceremony to cleanse the area and enable the consumers and staff of the health centre to be health.

There was an Open Day on 2 September and the community had an opportunity to have a closer look.  We have some photos below that will given you an idea of what the new Centre looks like.

The clinical areas for the Dental Program look amazing, with the colourful chairs, sterilising room and sterilising cabinets.

 Signage is good. Consumers will be escorted by stff to the treating areas and consulting rooms but the signage is clear.  There are two signs that seemed a little unclear.  The Women's toilet sign is odd: 'Female Ambulant Toilet'. Really, what does that mean? And the 'comingled recycling' intrigued me.

The parking spaces for people with disabilities are very good.  They are well located at the front of the building.

The Centre is impressive. It will be really interesting to see what the consumer feedback is in the coming months as services settle in.

Darlene Cox
Executive Director, HCCA

Empathy Burnout in Medical Students

Research has shown that medical students experience a significant decline in empathy by the time they enter their third year of medical school. This was particularly the case for students who rated lower in empathy at the beginning of their studies and those in technology oriented specialties.

The researchers commented that “when they embark on the journey to become physicians, most students are enthusiastic, filled with idealism and a genuine intention to serve those in need of help”. So what is happening?

There are many factors that can lead to empathy burn out in young doctors. For starters, it is not hard to imagine the stress and pressure involved in keeping up with the demands of medical training. The sheer volume of material that students need to cover is phenomenal. In addition to this, the environment in the hospital ward can be highly taxing and lead to both physical and mental exhaustion. For some students, negative experiences with consumers who are rude or even abusive can be extremely disheartening.

There is also a tendency for doctors to focus increasingly on their diagnostic tools and therapeutic technology, losing sight of their patient in the midst of their condition and test results.

Without empathy, there can be no consumer centred care. So how can we as consumers ensure that medical students and young doctors are able to guard against this sort of desensitisation to the plight of their patients?

While training and education go a long way towards raising doctors’ awareness of the risks of empathy burnout, this is not enough. Doctors need to be supported throughout their career to not lose sight of the humanistic aspects of their profession. Part of the solution would be to address problems with the overall health system that put excessive time pressures on doctors, preventing them from connecting with their patients.

For our part, the use of consumer stories could also be an effective means of reminding doctors how it feels to access the health care system from the other side.  We can also encourage doctors when they do a good job by providing positive feedback, either as a few words of thanks or in written form. In this way, doctors can see that the steps they take to engage and empathise with us as health care consumers is truly appreciated.

Nicole Moyle

Research Assistant

Bibliography

Chhabra, K.  ‘In medicine, is there a place for learning from those we serve?’ KevinMD.com

Accessed online 26 August 2012.

Hojat, M., Vergare, M., Maxwell, K., Brainard, G., Herrine, S., Isenbers, G., Veloski, J., & Gonnella, J. 2009. ‘The Devil is in the Third Year: A Longitudinal Study of Erosion of Empathy in Medical School’. Academic Medicine, 84(9): 1182-1191.

Interested in completing research into consumer engagement in health policy?

EXPRESSION OF INTEREST – Ref No: 120103

Research Assistant: Health Consumers and Policy Participation Project

Faculty of Business and Government, UCAN

UC Level 6 Salary Range: $67,269 - $72,413 pa, plus Super

This is a fixed-term, full-time or part-time position, for 3 to 6 months

Vacancy Reference No: 120103

Expressions of interest are invited for a Research Assistant (3-6 months, 3-5 days per week, immediate start) to work on a research project funded under a DVCR Collaboration Grant Scheme “The History and Impact of Consumer Engagement on the Formation and  Implementation of Health Policy in the ACT”.

The project is a partnership with Health Care Consumers Assocation. The position will be based in the Government Discipline in the Faculty of Business and Government at the University of Canberra. The project focuses on the role of health care consumers and patient organisations in shaping health policy and health systems. Citizen engagement in policy processes is recognised internationally as central for democratic governance and for the quality of health services. The project aims to fill a gap in work on outcomes of such non-expert citizen engagement in governance by examining impacts of health consumer engagement.

The appointee will assist with collecting oral histories and analysing other relevant data. Tasks will include conference organisation, assisting with the writing up and preparation of research publications, presentations and reports, maintaining communication with partners, and meeting administrative requirements for the project.

Applicants should have a degree in sociology, public policy, or STS (social studies of science, technology and medicine) or a relevant discipline. Research experience, and excellent communication and organisational skills are required. Experience with qualitative research and qualitative interviewing will be well regarded. To lodge an expression of interest, please provide a two page application addressing the above requirements.

For more information on this position please contact, Associate Professor Anni

Dugdale on (02) 6201 2722.

Closing Date: 16 September 2012