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

Reflections on the First International Health Care and Social Media Summit 1-2 September 2015

Social Media, Fear and Self Interest and the Khumbaya effect

I am still at that stage in my career where an opportunity to be a conference delegate very exciting. When Darlene Cox our Executive Director let me know about this conference I was pretty pumped. Part of my role along with Darlene and Khalia Lee is to manage our online social media presence, one that is steadily growing. As a fervent science communicator, and someone who just digs humanity and social change generally, I thing social media can do some spectacular things. This conference seemed like the perfect place to discuss how social media can level the playing field and give health consumers a space and the right to shape their health services and be heard. We cannot be ignored, because we are vocal, things go viral quickly and we are demanding for health services to participate in social media, this is our turf, this is not the old paternalistic model of health care, this is about us, our needs, our goals, our social media, we are inviting them to engage and they must respond.

The conference was run by the Mayo Clinic a not-for-profit US service provider that is considered to be leading in using technology, the internet and social media to provide patient centred care. It was run with The Australian Private Hospital Association, which to be honest I had never heard of, but purports to advocate for the needs of private hospital providers. We were a small delegation of around 160 with around 6 of us there as consumers. It was chaired by Norman Swan who increasing frustrates me in the antagonistic way he probes willing speakers to engage, dominates time we audience members tries to ask questions and then haggles those who ask questions. But he was well loved by attendees so perhaps I am overreacting.

A highlight for me was definitely Wendy Sue @seattlemamadoc who had obviously read many books on how to give the perfect ted talk. She spoke eloquently about how social media continues to change how medicine is practice, changing the power dynamic and the importance of consumers in the centre. Stating that social media is a tool that allows consumers to have a louder voice in the health care system, soon she said doctors will have to invited into a consumers health care team not the other way around. Social media is another way that consumers can look to determine quality and credibility of a health care service. This allows personalised medicine rather than paternalistic medicine, where we tell the services was questions we want answered, and how to work with us to meet our needs and provide care.

Another interesting session was about making sure that accurate health information is curated in social media. For example the anti vaccination movement get a lot of their power from social media so how can clinicians engage in this space to make sure accurate public health messages are being spread? They talked about a twitter storm where for 10 minutes a group of clinicians would work to flood social media with accurate information about immunisation. It seems that this could be a really power advocacy tool for the consumer movement too, we could do a twitter storm on person centred care, or quality and safety. What do you think?

Another theme of the conference is how do we create safe online communities? Because we know that people use social media is support groups, for example the endometriosis closed group here in the ACT.

I Reflected lots on social media and stories -  one session we talked about how our brains are hard wired to think in stories. So what is your SoMe story?  My reflection is that consumer stories are crucial to creating systemic change in the health system.

Bupa is everywhere. This is my other reflection. Every event I have attended this year Bupa is there. Certainly something for us as consumers to key an eye on.

Another question I had was how do you use comments on Facebook pages from consumers for quality and safety improvement in your hospitals and use some to include consumers in systemic change of the health system?

My biggest reflection on the conference as a whole was on the tension on wanting to use SoMe to get closer to patients and consumers and listen well and the fear that reputation and discussion is not controlled by medical fraternity.  Is it about providing evidence based care, and controlling dangerous medical misinformation, or fear of loss of personal reputation and fear of the power shift towards the consumer being at the centre and in control of care?

I hate the premise that everyone is controlled by fear and self-interest but that certainly seems to be why people come to the table but I want to know how can we harness the fact that they are at the table at all to create systemic change, to use the khumbaya effect and SoMe to lead and change the world.

Eleanor Kerdo, Policy Officer 

Health in Difference Conference Report By Elizabeth Proctor Health Care Consumers’ Consumer Representative & Eleanor Kerdo Policy Officer HCCA

Elizabeth Proctor:

In mid August I was lucky enough to attend the first day of the 9^th National LGBTI Health Conference Health in Difference (and I apologise for the delay in reporting back!). The most striking thing about the conference was how thoughtfully the program and speakers engaged with the overlaps and interactions between healthcare provision and marginalisation of groups. A special focus was placed on how Aboriginal and Torres Strait Islander and culturally and linguistically diverse LGBTI peoples face multiple disadvantages, both when seeking healthcare and more broadly.

The conference speakers shared stories that showed how far we’ve come in LGBTI communities, but also how much work remains – a lesbian mother who in the 1990s snuck into hospital to care for her baby (it took the hospital a week to notice there were two mums taking turns), Bob Brown’s memories of shock therapy and seeking out so many psychiatrists before finding one who gave him the best advice (‘Bob, sounds like you’re gay. Why don’t you try accepting it?’), Muslim-Australian siblings challenging the western notion of ‘coming out’ (instead, invite your loved ones into your life), and lawyers advocating for sex-positive aged care facilities (why aren’t there any double beds?). In a bright spot for aged care, Human Rights Commissioner Gillian Triggs pointed out that the recent change of law for inclusive facilities was almost surprisingly uncontroversial; updating the Sex Discrimination Act so religious aged care facilities were not exempt from LGBTI non-discrimination was met with general acceptance across the community.

Eleanor Kerdo:

On day 2 Eleanor swapped in and attended the ageing and aged care stream. There are lots of organisations working on making aged care facilities (ACF)  and services more LGBTI inclusive, both at a policy and personal level. Silver Rainbow is offering training on inclusive practice to ACF staff, while the Department of Social Services is developing formal standards for LGBTI inclusive aged care. Palliative Care Australia is similarly working on LGBTI specific policy frameworks. On a frontline service level, Switchboard Victoria provides community connections to isolated LGBTI elders through the good old cup of tea, connecting them to new friends who can build their confidence and support them settling into aged care.

Philomena Horsley of Gay and Lesbian Health Victoria (LaTrobe University) presented on LGBTI people’s experiences in end of life care and reflected on the history of end of life care in the LGBTI community. At the height of the 1980s HIV-AIDS epidemic, the LGBTI community was at the centre of an underground end of life care and euthanasia movement to support terminally ill patients with AIDS. At that time a large number of nurses and doctors could see a clear need for those services and took big personal risks to provide care. As conversations about dying with dignity become prevalent again it is timely to reflect on those moments in history that were so compelling to past generations.

Several community groups expressed an interest in HCCA’s Advance Care Planning Project, and Christine is looking forward to working with LGBTI communities in Canberra to help people develop aged care plans that work for them.

Thanks for sending us to this conference we thought it was excellent!

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