Health Consumers Queensland Annual Forum 2017

I recently attended the annual forum of Health Consumers Queensland (HCQ). It was held in Townsville, in North Queensland. The theme of the forum was Power and Passion: Culture Change through Consumer Empowerment and Partnerships.

Th team and HCQ will make videos, transcripts, and visual presentations from all sessions available soon.

Over the day I took notes and am posting my thoughts and take away messages in a series of blog posts.

Mark Tucker Evans, Chair, HCQ

The forum opened with a welcome to attendees and acknowledged the Hospital and Health Services (HHS) who supported consumers to attend as well as staff from HSS’s, Primary Health Networks, the Department of Health, a range of non-government organisations and private services. He thanked the consumers and carers on the reference group who developed the program. He reflected that there was a rich and diverse range of participants which would add value to the day. Mark said: "the Forum is about exploring opportunities for meaningful consumer engagement and demonstrations of how it changes culture of organisations and improves the delivery of patient centred care".

Mark also reflected that the Minister launched the Queensland Advancing Health 2026 at the inaugural forum in 2016 and would be at the forum today to give a report on achievement in the past 12 months.

Professor Gracelyn Smallwood – conducted the welcome to country and reflected on 50 years of working in th healh sector, as a nurse including her training and now being involved in training others.

Reflecting on closing the gap she said: “We all have to come together in a collaborative approach, public sector, non-government sector and corporate private sector and then we can move mountains.” Prof Smallwood was also very clear that “A tripartite approach is needed to close the gap. Not paternalism, it’s not about equality, it’s about equity.”

Melissa Fox, Chief Executive Officer

Melissa Fox introduced a short session highlighting the work of the HCQ.  HCQ began in 2008 initially as a Ministerial Advisory Committee. With the funding of the Queensland Government in the past few years they have been able to deepen the work they do in supporting strong consumer participation. The Board and staff of HCQ recognise that the Government has invested heavily in establishing the organisation. They received a three year funding $2.6m in 2015 over three years. Melissa introduced each staff member and they each spent a a few minutes talking about their work, reflecting on highlights and challenges in the past two years since they came a funded organisation.

Jo Sherring, Lin Hinspeter (consumer) – Raising health staff awareness about health literacy issues – impact of a consumer video on staff perceptions of health literacy. Townsville HHS

Jo Sherring is Clinical Lead for Townsville HHS. Lin is a retired nurse and consumer rep. They have been working to raise awareness of the importance of health literacy in the planning and delivery of heath care.

Staff truly believe they are communicating well and that patients have knowledge and understanding but this is not always the case. With this in mind the patient information and Health Literacy group at the Townsville Hospital decided to make a video for patients and their families on te difficulty of understanding medical information.

• ·        Consumers and carers were given common medical terms and asked to describe what it meant. Words included: triage, NUM, observations, oedemema, consultant, diuretic, titrate, intravenous, handover, multidisciplinary, analgesic, UTI, femur, hypertension, coronary, evidence based, self-care.
• ·      They were also asked what was it they would like health staff to know and to understand about them to improve their care.

The video has been shown in staff orientation, during Heatlh Literacy week and in staff training.

The key messages were excellent:

• It’s not our job to know your language. It’s your job to help us understand. Use plain language with everyone people can’t take care of their health if they can’t understanding it. How you provide information to us is important.
• There are lots of words and includes description and diagnose that is communicated quickly and we don’t; have enough time to process it. And we don’t always know the right questions to ask.
• Make sure the message you give is the message received. When a person is anxious they do not always here very well and it is easy to misinterpret.

Darlene Cox

Executive Director

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’

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 

Launch of Capital Health Network

Yesterday I spoke at the launch of the Capital Health Network. The entity was officially launched by Simon Corbell MLA, Minister for Health and Deputy Chief Minister.

The Chair of the Network, Dr Martin Liedvogal, shared the Blue Print with attendees. This document sets out the roadmap for the Network.

My speech is posted here for people to read. As usual, I strayed from the script a little bit...


Health Care Consumers Association is very pleased to work with the Capital Health Network. We are the peak consumer organisation in the ACT and represent the interests of consumers in our very complicated health system.

Consumers and carers need to have a strong voice not only at the Board level but across the operational areas of the Network. We supported a small group of experienced consumer representatives and advocates to provide important perspectives in the development of the blueprint for the Capital Health Network. We worked closely with the staff to develop the foundation documents.

We need to build our understanding of the needs of the community so that services can be developed and supported to meet those needs. The population health planning function of the Network presents us with an opportunity to refine our health system to keep our community as well as possible.

Primary healthcare is essential to a healthy community. There is a new round of reform being led by the Federal Government and this is driven by the desire to control costs in the health system.  But we need to remember that it should not only be about reducing costs in the short term but how we can improve the health of our communities in the long term. The focus of the reform has to be on spending health dollars on what works the best.

There is also reform in workforce. We are at an interesting point where there are many players stepping into the primary care space. General practice-based primary health care is still key but we are seeing the potential for more services delivered by other health practitioners like health coaches, peer workers in mental health and – dare I say it - pharmacists. And we know that private health insurers in this country are also very interested in how they can offer products to support consumers in primary care.

We are also seeing an increased focus on self care and self-management by people with chronic conditions. Health literacy is the key.

Affordability of healthcare is one of the biggest issues for consumers. Out of pocket costs of primary health care are significant. The MBS rebate has not kept pace with the increasing costs and so many consumers face very real decisions about what services to access or which prescription to fill. Cost to see GPs, medical imaging, pathology, prescription and over the counter medications, physiotherapists, and then there's the cost for dental care.

We need to make primary health care more affordable so people can access the care that will benefit us. The stronger our primary health care the less demand for acute services.

There is much work to do but the Capital Health Network does not have to do this alone. There are roles for the ACT Government, the professional bodies, community services, consumer organisations and of course the Network’s membership.

So in closing I would like to congratulate the staff and Board of the Capital Health Network. I would also like to acknowledge the work of the former CEO Leanne Wells, former Board Chair Rashmi Sharma, and also the role that Vlad Alexandric and Angelene True have played in the transition.

Community based solutions can only be developed in partnership. Clearly the Capital Health Network understands this and we look forward to continuing to work with them to meet the challenges the primary health care system faces and improve the health of our communities.

Darlene Cox
Executive Director

Health Literacy Forum, ACT Health - 24 August 2014

I attended the ACT Health forum on Health Literacy. I attended for three reasons: to support Yelin Hung who has been completing the course; to hear about what the other participants have learnt and also to present on consumer perspectives of health literacy. While the turn out was smaller than anticipated it was still a very useful morning of sharing and discussion.

What follows are the notes that I took from the forum.

Health Literacy - Michal Morris, Centre for culture, ethnicity and health

Michal Morris is the General Manager of the Centre for Culture, Ethnicity and Health (CEH). The CEH has been working with ACT Health staff on building their understanding of health literacy and devising quality improvement projects they can undertake in their workplace.

Defining health literacy:

Not one definition of health literacy that is a strength as it is content and context specific. It has to make sense to individual. It is going to change in professional lifetimes as the environment changes and the community changes.

There are commonalities that fit into every definition:

·         Have a good understanding of health outcomes

·         Focus on disadvantage – but you don’t have to define the disadvantage but acknowledge the barriers

·         The service system has to respond.

·         It can be an asset or deficit model.

·         Health literacy is not just when consumers are compliant but when they understand what is being said and interpreting it with their values and beliefs and come up with their own opinion.

Health literacy is being driven by the Commission at the national level. There is a strengthening of the links to the national health quality standards and a strong relationship with consumer participation and cultural diversity. There is a growth of interest and understanding of how it links to the health system.

Around 20 participants are completing the Health Literacy Course. There are four modules delivered over eight months. The four modules are:

·         Health literacy and communication

·         Organisational health literacy

·         Capacity building

·         Building on the knowledge

Health literacy – national perspective. Dr Nicola Dunbar, Australian Commission for the Safety and Quality in Healthcare (ACSQHC)

Definitions were developed over time with stakeholders. The Commission separated health literacy of individuals and the environment.

Work started in 2011 and they recognised it as a safety and quality issue. They reviewed the activity in health literacy and found about half of all health literacy related to health information but it also includes research and knowledge sharing, building individual health literacy, workforce training and policy development. The released a discussion paper and received 66 submissions and found out about over 200 initiatives that health services were using and there were a range of approaches with great variability. After this they developed a discussion paper to developing a national statement on health literacy.

At its core health literacy is about people being able to access, understand and act on health related information. There are three main areas of focus: embed it into systems, integrate in education and ensure effective communication.

Embedding health literacy into systems through the national level policies, curriculum and standards as well as policies and procedures at organisational level.

Ensuring effective communication with appropriate information is provided in a way that people can understand it in a form they need. IT is also part of interpersonal communication with education and recall as well as shared decision making.

Integrating health literacy in education included education for consumers about health, children at school. It is also included in the education and training of health care providers and students.

Di Webb, Tasmanian health department has been active in this area. They have had a health literacy strategy. They have videos with staff. Doesn’t matter where you start, you just have to start somewhere.

Everyone has a role in addressing health literacy – consumers and our families and carers, health care providers, health care organisations, government and education and training organisations.

The national statement was endorsed by Health Ministers in August 2014 and there was a national workshop on health literacy in November 2014. The workshop identified where to go next: building health literacy into systems, developing and implementing health information standard, supporting and empowering consumers, address the gaps between policy and practice, support staff to address health literacy needs through the provision of training and resources.

The Commission has published a series health literacy infographics and have also developed summaries of health literacy for consumers, clinicians and and executives and managers.

What are the drivers for quality improvement in Australia? The National Safety and Quality Health Service Standards are being reviewed and there is more explicit reference to health literacy in the new draft standards.

·         Governance systems – systems to support consumers to be partners n the healthcare design, delivery, measurement and evaluation.

·         Partnering with consumer sin organisational design and governance: understanding of diversity of needs of consumers; consumers are partnering in design and governance

·         Health literacy: embedded in systems; consumer receive information that supports safer care and better health outcomes and is easy to understand and use

·         Partnering with consumer in their own care

Clinicians provide consumers with information about health and healthcare that is easy to understand and use, is in a format that meets their needs, includes information about the things that are important like treatment and options and risks and benefits.

Where to next? If we are going to do this in a comprehensive way this is a long term proposition. There is no quick fix and it requires a multilevel approach. We need coordinated national approach to raise the profile of health literacy. But there are things that we can do locally to advance health literacy to improve the environment. Think about who uses the services, build health literacy into the policy framework and the training you provide to health staff.

Darlene Cox

Executive Director

Health Literacy for All

This work was completed as part of the consumer-led Health Literacy for All project that ran from June 2011 to June 2014. This project was an initiative of the Health Care Consumers Association (HCCA) of the ACT and was funded by a Health Promotion grant from the ACT Government.

HCCA has more than thirty years of experience in increasing consumer access to information about the health system. With the increasing complexity of our health system, it has become even more important for consumers to have access to opportunities to develop their knowledge of the health system. It is also important that these opportunities are ‘consumer-led’, that is, that they provide access to information that consumers themselves have said they need to know.

The Health Literacy for All project was designed around a community development model. The program particularly sought to provide assistance to disadvantaged and marginalised health consumers. It sought to promote consumer participation in the health system by providing opportunities for consumers to improve their knowledge of support, community and health services. It also sought to increase consumers’ ability to advocate for themselves and family in health contexts. This involved helping consumers to identify their own needs so that they would be able to interact more effectively with health professionals.

The topics for the modules are based on consumer requests, and the content of the modules was developed in consultation with consumers who participated in health literacy workshops. More than 250 consumers and 170 health care professionals participated in 40 workshops over a three year period. 

In the coming weeks the material we developed and use in our community information sessions will be uploaded to the HCCA website. 

Consumer Health Forum Workshops - Informed Consent & Quality Use of Medicines in Hospitals, March 2013

On the 25 and 26 of March, the Consumer Health Forum held two workshops; one on informed consent and the other on quality use of medicines in hospitals. Joanne Baumgartner, a HCCA member, attended on both days. Joanne completed this report to share with other consumers.

Workshop 1:  Informed Consent

This followed on from a previous workshop on Informed Financial Consent and discussion was focussed on the forms signed by consumers prior to their procedure or operation.

The general consensus was that patients/consumers need to be provided with substantially more information regarding

• The procedure itself;
• Who would conduct the procedure;
• The likely outcomes;
• Risks involved;
• Discharge and rehabilitation processes;
• Support options available, e.g. supported accommodation 

Consumers felt that these issues were not properly considered by health professionals and were rarely, if ever, discussed. In particular, rural consumers are often transferred to major city hospitals without their Informed Consent paperwork and are expected to simply accept whatever procedures were carried out at those hospitals. There was also no access to adequate post-discharge care in rural areas.

Treatment of mental health consumers was also an area of concern with regard to consent, as consumers felt that unnecessary force was being used too often with Involuntary Patients. This was considered to be an abuse of human rights. New procedures and protocols are required to ensure that all consumers are treated with dignity and respect.

Papers were presented by a range of health care professionals, including medical specialists and university researchers in the area as well as the Health Care Complaints Commissioner. These professionals agreed with consumers that more information needed to be provided to patients during the consent process. The suggestion was made that both consumers and clinicians could be required to check boxes indicating that sufficient information had been provided before signing off on a procedure.

Workshop 2: Quality Use of Medicines in Hospitals

This workshop specifically focussed on the lack of continuity of care and poor record keeping with regard to prescriptions in hospitals. The gaps between the emergency department and inpatient wards as well as poor communication on discharge were discussed. Consumers identified one of the main issues to be that many consumers, especially the elderly, did not have adequate knowledge or understanding of their medications to keep track of their own prescriptions.

A study has found that patients experienced fewer adverse effects from medications when they were able to keep them in a cabinet drawer by their bed and able to follow their medication regime on their own. However, consumers are rarely afforded this level of trust by clinicians with regard to administering their own medications.

Consumers also agreed that the use of generic medications is often confusing in hospitals, as it is hard for them to check whether they are being given the correct medicine and dosage. A hospital pharmacist explained to the group that hospitals were now using generic medications to save money, making it unlikely that consumers would receive the medications that they were used to at home. In this case, hospital staff need to ensure that consumers are told which medication is which to help them keep track of what they are taking.

Five ‘Rights’ for Quality Use of Medicines were identified as follows:

·         Right Patient

·         Right Drug

·         Right Dose

·         Right Route

·         Right Time

The workshop attendees agreed that all consumers have the right to receive information regarding their medications in an understandable format, rather than the many pages of unrelated information that is currently provided.

Joanne Baumgartner
HCCA Member and Consumer Representative 

Consumer consultation on national health service standards

The Health Care Consumers’ Association Inc and the

Australian Commission on Safety and Quality in Health Care invite you to a consumer consultation on the

National Safety and Quality Health Service Standards

The Commission is seeking comment on the draft National Safety and Quality Health Service Standards to:

•     Ensure the standards address consumer expectations for safe and high quality services.
•     Refine the standards and ensure they are meaningful for health services, practitioners implementing safety and quality systems as well as accreditation agencies and surveyors using the standards to assess compliance.
•     Standardise and streamline processes where possible.

Five Standards were released for consultation in November 2009. The Commission is now seeking comment on the additional five draft Standards before they are piloted in health services and forwarded to Health Ministers for consideration in 2011.

The additional five Standards are:

    Partnering for Consumer Engagement which creates a consumer centred health system by including consumers in the design and delivery of quality health care.

    Blood and Blood Product Safety which sets the standard to ensure that the patients who receive blood and blood products are safe.

    Prevention and Management of Pressure Ulcers which specifies the expected standard to prevent patients developing pressure ulcers and best practice management when pressure ulcers occur.

    Recognising and Responding to Clinical Deterioration in Acute Health Care which describes the systems required by health services responding to patients when their clinical condition deteriorates.

    Preventing Falls and Harm from Falls which describes the standards for reducing the incidence of patient falls in health service organisations.

The draft standards are available online (pdf 714kb).

Date:    Friday 1 October 2010

Time:   10.00am - 3.00pm

Where: Southern Cross Club, woden

Places are limited and RSVP is essential.  Please contact the HCCA office on 02 6230 7800 if you are interested in attending.

Health literacy - what does it mean?

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HCCA members and staff have been talking about health literacy in recent weeks. We are thinking about what this means for consumers and the types of supports that could be put in place to improve our health literacy. This is of particular importance at the national level with the current consultations on the National Health and Hospital Reform Commission.

We have pulled together a few definitions that we would like to share and are interested in your feedback.

The Australian Bureau Of Statistics Report on Health Literacy in Australia (2008) is a significant report and we consider it to be critical to health reform in Australia. It defines Health Literacy:

the knowledge and skills required to understand and use information relating to health issues such as drugs and alcohol, disease prevention and treatment, safety and accident prevention, first aid, emergencies, and staying healthy.

A similar definition that we also considered is contained in an online article that talks about the recommendations of Adelaide Thinker in Residence, Professor Ilona Kickbusch, the Healthy Ageing Research Cluster (HARC), to establish the Health Literacy Alliance. Susan Gravier, Co-ordinator of HARC at the University of Adelaide, explains what health literacy is, and how the Health Literacy Alliance aims to help our society.

Health Literacy is not just knowing how to read but knowing how to navigate through life, keeping health in mind and in practice. It's knowing about the body's functions and signs of dysfunction; knowing how to find, interpret and understand information, and how and where to seek further information when required; knowing what constitutes good quality advice, and how to translate this help into action.

Harvard Material on Health Literacy

This Harvard site has a very useful set of guides in plain English as well as lots of information about creating material for adult low literacy groups. The American focus seems to be on the need to cater for people with poor print reading skills. It contains some excellent material for people developing programs and material for the public.

Wikipedia

Studies reveal that up to half of patients cannot understand basic healthcare information. Low health literacy reduces the success of treatment and increases the risk of medical error. Various interventions, such as simplified information and illustrations, avoiding jargon, "teach back" methods and encouraging patients questions, have improved health behaviours in persons with low health literacy.

The University of Queensland has released a response to ABS study:

This research has revealed that nine million Australians — or 60 percent of the population between the ages of 15 and 74 years — don't have the basic knowledge and skills to understand and use information about their own health.

The impact of such a high proportion of Australians without basic health literacy skills should be of major concern to anyone wanting to ensure people and communities are better able to promote their own health and prevent disease.

(Professor Robert Bush, Health Communities Research Centre)