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

Advertising by Chiropractors - AHPRA Forum 28 July 2016

On 28 July 2016 I attended a forum on Advertising that was convened by AHPRA and the Chiropractic Board of Australia in Melbourne. I was there in my capacity as a member of the AHPRA Community Reference Group.

The purpose of this forum was to facilitate open communication of different perspectives on advertising by chiropractors and provide stakeholders with information to increase understanding of issues around advertising by chiropractors. There was discussion of the role of advertising by chiropractors in supporting good healthcare decision-making and the risk of harm by misleading advertising. There was agreement about the importance of the responsible provision of information by registered chiropractors to the public. The participants were also encouraged to identify ways to improve the quality of advertising by chiropractors.

Participants were from a range of stakeholder groups including AHPRA Community Reference Group, CHOICE, Friends of Science in Medicine, Chiropractic Board of Australia, Chiropractic Council of NSW, Australian Securities and Investment Commission, ACQSHC, Chiropractor’s Association of Australia, Consumers Health Forum and Chiropractic Australia.

The Chiropractic Board of Australia and AHPRA have noted that there continues to be a high number of complaints made about chiropractors’ advertising; and the Board is concerned about the ongoing issues and confusion about advertising guidelines.

The Board is working with AHPRA to inform chiropractors of their responsibilities, as outlined in the advertising guidelines, in order to improve compliance with the guidelines and the law. The Board has run seminars around Australia to explain the Guidelines for advertising regulated health services, as well as to provide additional information and answer questions about advertising.

I spoke on a panel in the afternoon. I thought my speaking notes might be of interest.

For consumers, control and choice are important aspects of our health system.

Consumers must be able to make informed choices regarding our health care. Informed choice are dependent on receiving reliable, balanced health information that is free from the influence of commercial imperatives and is communicated in a way that we can easily understand.

We want to make informed choices about therapeutic goods as well as medical and health-related services. So I’m talking about over the counter and complementary medicines, prescription medicines, medical devices as well as medical and surgical procedures.

Advertising can play a role in this. It is not all bad.

There has been considerable attention given to this in the past decade. More recently the focus of advertising has turned to health professionals and services.

As with all things it is a question of balance. While there are risks that advertising can drive unwarranted testing and interventions there is also the argument that it reduces under diagnosis and under treatment of conditions. Advertising can enhance patient perceptions about conditions that could be medically treatable and encourage dialogue with health care providers. Advertising can build on levels of health literacy. But that is dependent on quality.

Advertising can also play a role in changing the way we think about diseases such as depression, incontinence or erectile dysfunction. Good advertising can reduce the stigma associated with these conditions.

Advertising can promote competition and transparency.

What do we value?
• Choice and control
• Being supported to make an informed decision about our health
• Honesty and truthfulness
• Patient centred care
• Information that I easy to read and understand

What do we assume?
• That professionals are well trained and supported to deliver services
• That they are working to support us to live as well as we can
• That they will put our wellbeing ahead of their business interests
• That they will be truthful
• That they will first do no harm

We trust our health professionals. We have trust in the health system and have a heavy reliance on this. And we are influenced by the authoritative role our health professionals play in our lives. They are influential. And many of us trust advertising. There is not a high level of critical literacy in our community but programs like the Gruen Transfer and The Chase are helping.

What do consumers want?
• Want to make decisions to improve out health
• Reliable information based on current evidence
• Include registration number and membership of professional bodies
• Truthful, no false claims, not manipulate us.

Advertising:
Advertising can play a useful role in building consumer understanding of health care, of procedures and medicines. Advertising can raise awareness of health issues, diseases and chronic conditions. It can also play a role in reducing stigma associated with some conditions that people may be embarrassed by eg. Depression, incontinence, erectile dysfunction.

Advertising can provide lifestyle advice and encourage consumers to take a more active role in managing our own health. Advertising can help consumers to take action, seek attention and reduce under-diagnosis or delays in treatment.

Rather than recommending chiropractors, seek independent advice. Why can’t the Board and AHPRA take more action to provide this? What role can consumer panels play in providing this advice?

Ultimately until we have public reporting of outcomes and adverse events we will continue to be reliant on advertising and word of mouth from consumers.

Risk to Consumers:
We need to build community understanding and awareness of the importance on truth in advertising in health care. There are risks in all health care but we do not talk about this enough. And it is consumers who wear the risk of misleading advertising. It impacts on our health, on our lives. We may make decisions based on misleading information. So this is an important public interest matter.

Misleading advertising can lead consumers to have unnecessary treatment.

Testimonials:
National law is very clear, they are not permitted. This is an area of interest for consumers. It is also about consumer feedback. Partly it is because they educate/ inform consumers about the work health professionals do. Many consumers do not know what the scope of practice of individuals is. Instead of testimonials, why not use case studies? Examples of safe practices? We need more information about what we can expect.

Continuing Professional Development (CPD)
All registered chiropractors must comply with the registration standards set by the Chiropractic Board of Australia and make a declaration of their compliance with these standards when they complete their registration renewal application each year.

The CPD standard requires all practising chiropractors to complete at least 25 hours of CPD per year. And at least half of this have to be in formal learning activities. The Boar d provides advice on their website on what constitutes formal and informal learning. All practitioners must hold a current Senior First Aid (Level 2) certificate or equivalent. First aid certificates need to be renewed every three years to remain current.

My talk:

As is the case, most of the speakers who spoke before me covered many of my points so my notes were put back in my bag and I started again.  What follows are the hastily written notes I made for myself:

A few points to start off with.

I find it very difficult to separate advertising from practice. I am not alone.

Public reporting of outcomes would improve this situation as it would mean we are not reliant on advertising and the experiences of family and friends or the rapport we have built with our health professionals. Our health decisions could be based on data.
I strongly support consideration of reviewing the CPD courses to make sure that they include the science of evidence based medicine as well as being educationally sound.

And yes, AHPRHA registration means something. It implies that registered health professionals are competent and will do no harm. AHPRA registration – right or wrong – can be taken as a proxy for competence.But risk is inherent in health care and we need to improve the way risks are talked about in the public arena as well as by health professionals seeking informed consent of their patients and clients.

And who are the registered chiropractors who are not members of professional bodies? Is there a correlation between those who are not affiliated with professional bodies and those who do not comply with the advertising rules?

I am interested to know how the three professional bodies are taking an active role in reviewing websites and advertising? There are risks to consumers and reputational risks to the profession.
Easy to be dispassionate but health care is about emotion. We are invested – we have relationships with the people who treat us. Our health is about our life and about the lives of the people who we love. What about those people at the end of their tether? They have tried other health services and not received relief from symptoms. These people are vulnerable and desperate and may make emotionally based decisions. It is good to see emotion in this room because this matters.

We make emotional decisions about health care. We don’t always look at the evidence and some of us may not have the skills or awareness to do this.

And advertising can tap into that. It is influential and can shape our health decisions.

The system is reliant on professionals doing the right thing but the eyes and ears of the public are focussed on identifying breeches. And we need AHPRA to act. Regulatory responses seem to be too slow. AHPRA is totally overwhelmed by the number of complaints on advertising. Over 600 complaints but only about 20 significant actions, and in what timeframe? Responsiveness and timeliness is an issue. This needs to improve.
Whose voices haven’t we heard?

What about vulnerable people who may not understand their rights, or consumer law?

What about people who are recent arrivals in Australia and do not have knowledge of our health system? Will they have the critical literacy skills to work out if they can trust the advertisements and make informed health decisions?
And what about people with poor English language proficiency or cognitive impairment?

This is why we need to be vocal and call for more action. These people may not make complaints – it is up to us.


Further information

AHPRA Guidelines for Advertising

Chiropractic Board of Australia Advertising for Chiropractors – Frequently Asked Questions

Chiropractic Board of Australia Statement on Advertising – 7 March 2016

CBA Newsletter 29 July 2016

Darlene Cox

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

Consumer-led Ideas for Better Primary Health Care – CHF Workshop

On the 19^th August, I had the pleasure of attending a workshop on the future of primary health care, organised by the Consumers’ Health Forum of Australia (CHF). The program for the day included an impressive line up of speakers, including the current Commonwealth Minister for Health, who demonstrated energy and commitment to reform.

Proceedings kicked off with presentations from the Chairs of the two connected large scale reviews currently underway: the review of the Medicare Benefits Schedule and the Primary Health Care review. It was encouraging to hear that the two reviews are not being conducted in isolation from one another, with crossover in membership designed to keep watch on changes in one area that may have significant consequences for the other. Both speakers emphasised that their tasks were not about savings, but about better “value” health care (focused on value for the system rather than the individual consumer). Both also commented on the importance of providing and measuring quality care through methods such as increasing use of clinical guidelines. Although there was a significant focus on people with chronic conditions and complex needs, how to deal with conflicting care guidelines for these people was not mentioned.

The focus on costs continued with the presentation from the private health insurance industry representative. The speaker described two programs focused on reducing costs associated with avoidable hospitalisations. The first targeted health fund members with chronic illness and repeated hospital presentations, providing integrated care wrapped around the consumer and GP. Services included phone support, care navigation and flexible funds to be used to improve health literacy and help ensure appropriate care. The second targeted consumers being discharged from hospital, providing three brief follow-ups to reconnect people with their primary health care providers. Both programs were described as having consumers at their heart and clearly have great potential to improve outcomes. It was therefore a bit disappointing to see the “outcomes” box on the evaluation slide describe the result as a reduction in claims rather than an improvement in health.

For me, the contrasting presentation was from the Australian Health and Hospitals Association speaker. She took the approach that incentivising health professionals to engage in what should be good business practice was not a good use of health funds. Reforms need to focus on the rising out-of-pocket costs for consumers as well as the system costs and focus on achieving outcomes rather than rewarding the business of carrying out health care. The business example was taken further with discussion of outdated IT practices hampering progress. This includes problems with data sharing and a lack of interoperability between proprietary health-related software packages.

The main theme of the day therefore turned out to be “how can we squeeze better value out of what we’re already doing?” Costs are an important part of health care but I am bothered when they are wrapped up as “person-centredness” as it can lead to selective care and ignores what matters for consumers. Rewarding outcomes sounds like a smarter move than activity-based incentives, but what happens to the consumers with very complex needs and/or multimorbidity who may not be able to achieve the outcome targets that get doctors the rewards? There is a risk that these consumers may face limited choice of health professionals willing to take them on.

The other theme that emerged was health literacy. I was interested in the conversation regarding health literacy as it seemed to be discussed as the way to ensure people could navigate the health system. Whilst it is true that improving health literacy can help consumers understand the most appropriate health care choices, this does not automatically equate to an ability to navigate the system or make the lowest cost choices. Factors such as complex conditions and location can also play a strong role in where consumers turn for health care. 

Michelle Banfield
Vice President, HCCA

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.