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

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

NPS Medicinewise National Medicines Symposium 2014 Conference Report Medicines in Health: Shaping Our Future

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.

The conference was held over three days with three different plenary sessions, these were:

1) Medicines in health: shaping our future – sessions were focussed on taking a long range view of medicines in health from the perspective of individual consumers, health professionals, the broader health system and our future society;

 2) Sustainability – future sustainability of medicines in terms of cost, benefit, access, quality and safety and investment in an increasing competitive market; and

 3) The implementation experience – looking at real world challenges in translating evidence into action and positively shape the future.

HCCA will be featuring in separate blog posts a rundown of each of the days which can be found at the following links:

·         Day 1

·         Day2

·         Day3

NPS Medicinewise National Medicines Symposium 2014: Day 1

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014 which was held over three days. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.

Here is a summery on the first day. To read more about the other two days of the conference, click here.

Plenary 1 – Medicines in health: shaping our future

Two of the National Medicines Program objectives which are important are:

·         Timely access to affordable medicines; and

·         Medicines need to meet appropriate standards of quality, safety and efficacy.

Three emerging issues are:

1)      Medications are moving closer to the patient because of access to patient’s personal knowledge and data and patient’s ability to self manage;

2)      Data and knowledge; and

3)      Complex systems.

Three challenges were given the most relevant of them was:

1)      How can we create a system that brings medications closer to a patient in a way that is safe and provides quality outcomes?

Health Landscape in 2025, Mark McCrindle  (McCrindle Research)

·         Speed and scale of change has been very fast;

·         Need to observe, respond to and shape the future;

·         Demographic with economic change and generational change means we as a country are growing faster than any other OECD country;

·         Record number of births in Australia at the moment;

·         60% of net overseas migration is to Australia;

·         People are contributing longer to the workforce and life expectancy is longer now compared to 1995;

·         There is a diversification of the Australian population born overseas;

·         Health expenditure as a percentage of Gross Domestic Product (GDP) is increasing; and

·         Total expenditure on public health has increased since 1995 but it is expected to decrease by 2025.

Other interesting statistics are:

·         742,000 medicines are dispensed each day in Australia;

·         342,000 people visit a GP each day in Australia; and

·         17,000 people visit an ED at a larger hospital each day in Australia.

If consumer preferences are likely to change and demands will change as well as a result and no doubt will increase.

From here to there – The Pathway to a Healthy Medicines Future:  Where do we start? Where does regulation fit? John Skerritt, National Manager (TGA Health and Safety Regulation)

·         There is a shift from the short term use of therapies (e.g. for infections) to now the management of chronic disease and conditions with medications;

·         Most people over 50 years of age have 3 co-morbidities;

·         Clinical trial evidence requirements for medicines registration have had to evolve because of the benefit/risk or tolerance to the medication differs for different populations and individuals; and

·         A question was posed whether – ‘off-label’ medicines prescribing were necessary because of the inability of regulatory approvals in keeping up with clinical trials and developments.

Melissa Fox, Co-ordinator, Health Consumers Queensland

Melissa spoke about the role of a health consumer and the potential impact of the proposed Federal 2014 Budget regarding the copayment fee for consumers visiting a GP and as Consumer Health Forum (CHF) stated the demolition of a universal health care system and consumers’ lack of understanding about the Pharmaceutical Benefits Scheme (PBS). Melissa also stated that:

·         Consumers needed to be empowered and this can be done through health literacy;

·         Information needs to be provided to better manage their health condition – i.e. does the person know what they are taking and what happens if medications are swapped;

·         Consumers need consistency of information’;

·         The health professional needs to give information with the scripts and in ways to meet people’s needs i.e. low literacy levels and cultural and linguistic diverse background (CALD).

Summary Day 1

Some of the speakers from Day 1 were asked to provide a short summary on the fiscal responsibility question ‘is the quality use of medicines an outdated notion or, is it more relevant than ever if cheaper better safety critical medications are being used?’

·         Staggering number of prescriptions never filled or filled for one course only or only taken for a few days is a staggering health cost of the hospital. It is also a constraint to quality health outcomes;

·         If people were to take their prescribed medications then there would be a lot less people in hospital;

·         Health system is broader than the long term economic environment however, it would benefit from better compliance;

·         Consumers’ expectations are to have a better health care system because of the taxes they pay;

·         People have to be helped before they get to hospital;

·         Need better outcomes for both individuals and the health care system;

·         How do medications fit into prevention as people live longer and medications prolong people’s lives; and

·         Patients must be seen as people and people do manage their own health agenda.

Pat Branford

HCCA Consumer Representative

NPS MedicineWise National Medicines Symposium 2014: Day 2

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014 which was held over three days. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.

Here is a summery on the second day. To read more about the other two days of the conference, click here.

Day 2 Plenary 2 – Sustainability

For these plenary sessions the theme was about exploring the future in terms of cost, benefit, access, quality and safety and investment in an increasingly competitive health environment with a focus on sustainability.

Sustainability and innovation – can we actually afford medicines – Professor Ian Frazer, CEO and Director of Research, Translational Research Institute

The main points discussed were:

·         Research priority is determined by a person’s interest and is not dictated by government interest;

·         The longer we live the less likely we are to be healthy and as we age we use the health system increasingly more;

·         As a community of connectedness (i.e. via social media/internet) you know what other healthy communities are receiving in terms of health care and you know that you are not getting it and you want it;

·         The need to meet consumer demand and treat non-infectious chronic conditions increases as we age;

·         Whether a person receives optimal health care is determined by a persons’ ability to pay i.e. it is determined by their income and it is not a right i.e. it is not a universal health care system; and

·         There is a stringent need for safety regarding medications however, the cost of new medications are past onto patients.

Cost and value: a consumer perspective – What rights do I have? What should I be able to expect? How are my expectations and values recognised? Durhane Wong – Rieger, President and CEO, the Institute for Optimizing Health Outcomes, Canada

Durhane saw the role of a consumer as being:Durhane saw the role of a consumer in relation to medications as being:

Appropriate access to medications:

·         An assessment of benefits, risks, range of patient trade-offs;

·         Medications need to be personalised – i.e. right medication, right patient, right time;

·         Regulatory uncertainty of medication balanced by post market surveillance.

Responsible access to medications:

·         Taking medications as prescribed;

·         Monitor for adverse effects; and

·         Feedback on real – world effectiveness.

Sustainable access to medications:

·         Affordable cost to patients (i.e. co-payment);

·         Pricing based on comparative value (two systems); and

·         Sufficient return on investment – so there is an incentive for innovation.

Irresponsible use of medications is unsustainable and costs over 9% of the health expenditure or $500B globally on irresponsible use of medications and there is approximately 54% non adherence to medication use.

Patient Self-Funding of High-Cost Medications – what are the ethical issues? Dr Jennie Louise, University of Adelaide

Arguments for self funding of high-cost medications are:

·         Respect for patients autonomy:

o   Patient is in the best position to determine the merits for themselves; and

o   Not giving patients information is paternalistic.

·         Patients should be given information that they would deem to be relevant or they would care to know about.

·         There were some reasons for caution given:

·         Patients may not be best placed to evaluate complex evidence regarding effectiveness of the medication;

·         (generalisations were made) that most patients are desperate and vulnerable;

·         (generalisations were made) that most patients are not in a position to objectively weigh information; and

·         Doctors may influence decisions even if they are not trying to.

There could/would be great variability in patient’s circumstances:

·         Disease and prognosis would differ between patients;

·         Treatment whilst evidence based, the likelihood of benefit, toxicity and side effects could well be different; and

·         A patient’s non-medical circumstances, goals and concerns would also need to be taken into account.

The unintended negative consequences for social and health systems are;

·         More pressure by patients, groups/public to fund no-cost effective medications

·         Undermining bargaining power of giants; and

·         Creating additional costs to the public system.

Monitoring for toxicity, treatment side effects, longer consultation times, administration of medication will drive up the costs.

Equity considerations

·         Particularly important for the public system;

·         Inequitable more affluent patients can access treatment not available to others in their home state; and

·         Rural customers can’t access treatment at all.

Other sources of inequity

·         Could lead to distortions in health care funding that further adds to inequity;  and

·         May have to pay for health care beyond basic health care.

Suggestions

·         Cost sharing by paying 50% of the medication;

·         ‘patient advocate’ make a more autonomous decision i.e. impartial third party.

·         Defensible presumption against self; and

·         HCCA could be a patient advocate but I was told that they would need skills to determine what patients want.

Chronic Conditions, financial burden and pharmaceutical pricing: insights from Australian Consumers Associate Professor Jennifer Whitty, School of Medicine, Griffith University; School of Pharmacy, The University of Queensland

·         Prescription medication (Pharmaceutical Benefit Scheme - PBS) spending was approximately A$10.1 Billion pa in 2011/12;

·         Consumers (patients) fund approximately 17%  - A$1.7 Billion pa;

·         Australians median (average) out of pocket prescription costs are $199 pa; and

·         Patients don’t fill prescriptions because of the cost.

Findings re Financial Burden – Aggravating Factors

·         dose, administration, aids, Webster packs all equal additional costs;

·         once cease employment medication costs too much money; and

·         lack of consistency between pharmacies and costs of medications.

Consequences

·         reduced adherence to taking medications because of the cost;

·         stockpiling of medications by some patients;

·         cost displaces luxuries (example given was cigarettes); and

·         not working so patients can get a health care card and get medications cheaper.

Understanding and beliefs related to pharmaceutical pricing

·         relief of costs can be obtained by either and/or having a health care card and the safety net;

·         access to medications not on the PBS in chronic conditions is an extra cost; and

·         fairness is an issue as a patient you have paid your taxes and you are not to blame for your condition but you have to pay high costs for your medication.

Conclusion

·         Australian consumers with chronic conditions and carers perceive there is a financial burden associated with medication use; and

·         This financial cost is compounded by the ongoing need for medical care and medication.

Dementia and care transitions: actions to translate data and knowledge into practice – Professor Gabrielle Cooper, Discipline of Pharmacy, University of Canberra

·         It is illegal to do research on dementia care patients in the ACT.

Issue of Identity

·         Lack of timely and accurate information sharing between the range of providers (GP/hospital/pharmacy/RACF);

·         Lack of awareness by a range of clinical staff of a patients possible dementia diagnosis e.g. ED, X-Ray, orthopaedics, pharmacy, support staff;

·         Inconsistent use/type of medication supports e.g. dose, administration aids;

·         Limited access to appropriate trained support staff to assist or just assist in settling patients; and

·         Hospital pharmacies have different alignment of Webster care packs.

Other points

·         Need to settle patients – calm considered approach. Dementia training also required for pharmacy staff and meals person;

·         There are medication discrepancies between care settings which aren’t reconciled and recommendations aren’t being followed up on due to lack of documentation and communication strategies e.g. need transition medication charts;

·         Lack of after hour support for families and small facilities to avoid acute readmissions. Graduate nurses could go with a patient to a facility/hospital to help settle a patient in;

·         Best practice was centred on individual champions – GPPAD ACT.

Pat Branford

HCCA Consumer Representative

NPS MedicineWise National Medicines Symposium 2014: Day 3

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014 which was held over three days. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.

Here is a summery on the third day. To read more about the other two days of the conference, click here.

Day 3 Plenary 4 - The Implementation Experience

For these plenary sessions about sustainability the theme was about exploring real world challenges in translating evidence into action and positively shaping the future.

Better communication about medicine shortages – Industry/TGA partnership update: Dr Tony Hobbs, Therapeutic Goods Administration (TGA)

There may be a shortage in the Australian market of a prescribed medication this can either be a temporary or a permanent (discontinuation). The Therapeutic Goods Administration (TGA) has a website where information may be obtained about the shortage of medications if it has been voluntarily provided by pharmaceutical companies.

The website address is: http://www.tga.gov.au/medicine-shortages-information-initiative

Tapping into the Lived Experience – Dr Lorraine Smith, the University of Sydney

The main points discussed were:

People with health problems want high quality information and support

·         Provision of answers to questions;

·         To be able to relate to other’s experiences;

·         To make decisions about their health management; and

·         Communicate effectively with health professionals.

Resource Solutions

·         Need to be evidence based;

·         Multimedia;

·         Freely available;

·         Web-based; and

·         Designed for patients, friends and carers.

Questions Posed to Patients should Cover

·         What is your health condition like for you?

·         Are you taking your medication; and

·         What was it like telling your family about your health condition?

It was stated that the NPS Medicinewise website has information for patients about living with multiple medications and talking points about travelling with medications and routines.

Ethics and the media master class in reviewing and evaluating news stories – Facilitated by Gary Schwitzer, Publisher of HealthNewsReview.org (USA) and Dr Justin Coleman, GP at Inala Indigenous Health, Brisbane and President, Australasian Medical Writers Association (AU)

To determine if a news story has efficacy does the story explain:

·         What’s the total cost;

·         How often do benefits occur;

·         How often do harms occur;

·         How strong is the evidence;

·         Are there alternative choices;

·         Is the condition exaggerated;

·         Is this really a new approach;

·         Is it available;

·         Who’s promoting this; and

·         Do they have a financial conflict of interest?

To determine what’s the impact on a patient is the benefit exaggerated or emphasized and/or the potential harms ignored or minimised.

Most common flaws in a news article are:

·         Conveying a certainty that doesn’t exist;

·         Exaggerating the size of the effect;

·         Using causal language to describe observational studies;

·         Failing to explain limitations of surrogate markers and end points;

·         Single source stories with no in-depth perspective; and

·         Failing to independently analyse evidence.

Common flaws:

·         Too much stenography i.e. no in-depth vetting of studies in journals;

·         Some articles are not ready for ‘prime time’ publishing i.e. journals are meant for conversations among scientists;

·         Articles were never intended to be sources and daily news – journalists must be aware of the landscape in which they are published;

·         Retractions, research funds, fabrications and falsifications of data;

·         Unpublished data and ghost writing.

We were given several quotes and snippets to take away and think about:

·         Treat medicine as a science and news differently;

·         “Bad science is no excuse for bad journalism”;

·         Inclusive insightful hard-hitting humour makes points and impact but you need to be aware of limitations of the data and you should never believe the stated bottom line without confirming the data;

·         Don’t take anyone’s word for it; and

·         Association is not causation.

Other points

·         Associated Press and Reuters journalists are told to keep their articles under 500 words;

·         Website www.healthnewsreview.org toolkit tab has a link to 100 industry -independent health care experts that state they do not have financial ties to pharmaceutical or medical device manufacturers. There are some Australian health care experts listed on this website;

·         Online stories have embedded mini polls that ask questions or mini clicks within the story to increase the click rates to impress the journalists’ editor; and

·         When reading an article you need to think about avoidable harm and what is the real risk? Always think about the ‘harm’ aspects and are they covered in the article adequately.

Summary

·         Vision is for a high performing health system for universal health care in all countries;

·         Three dimensions of health care:

o   at the lowest level – population – who is covered;

o   services – which services are covered; and

o   top level – what do people have to pay out of pocket.

·         Growing demand for health care is based on:

o   aging;

o   non-communicable/chronic diseases; and

o   rising community expectations.

Pat Branford

HCCA Consumer Representative