Category: Blog

Community and connection – how peak bodies pivoted during COVID-19

When COVID-19 hit the headlines early in 2020, there were big concerns around how people would be able to maintain strong connections with their peers and communities, while self-isolating, working from home, and spending more time on their own.

It was fascinating to see how organisations around WA pivoted their activities to make sure people could still connect and get the support they needed. We take a look at how that unfolded for several key consumer organisations, and the lessons learned about community during a global crisis.

People With disabilities WA

People With disabilities WA have always done a lot of work through phone and email so the biggest shift was ensuring that these things could still happen while staff have been working from home. We were aiming for as little disruption for consumers as possible and the biggest issue was that some of our group meetings for projects had to move from face-to-face to an online Zoom or other format.

What we found was that for most of the people with disabilities that were part of these groups, doing a meeting via Zoom was a lot easier and made them more able to attend and participate. This was the same for some of our individual advocacy work where people with physical disabilities in particular and disabilities which made it difficult to access transport were much more comfortable using tele or videoconferencing. However, for others with different disabilities, Zoom meetings were and are more difficult.

We found that there was a very little change in the amount of interaction and communication that we have been getting from consumers. Certainly there has been no decrease in the need for advocacy whether things were COVID related or not.

For our individual advocates and our project staff we will be continuing to use Zoom and Microsoft Teams as a way to connect with each other and with people coming to us for support. Our staff are seeking more flexible arrangements with their work, and our technology and understanding of technology has increased to allow that flexibility to happen both for our staff, and the way we interact with consumers. These are absolutely things that we need to keep in place and will be keeping in place into the future.

 

Consumers of Mental Health WA

Consumers of Mental Health WA (CoMHWA) created and maintained a central hub of resources for consumers and provided education and upskilling to peer support workers working through these changing times.

They increased their social media presence and encouraged ongoing engagement with members through online means. To support this, they recorded video messages from staff and produced resources for how to use online video conferencing.

CoMHWA provided a continuity of support through transition to phone and online meetings where appropriate. They ensured phone and in-person support resources were mailed to members, to ensure that members without technology or internet access where still able to reach needed supports.

CoMHWA found many people responded positively to these changes, stating that the information being made available was useful and a welcome distraction. Importantly, they noted it was great to still be able to connect with others.

However, some consumers found the technology difficult to navigate or did not have access to technology. Others found it hard to engage with others effectively in this way, with one consumer saying it was “harder to stay focused in online meetings due to the lack of active engagement activities and interaction”.

On the whole, many consumers want the provision of education and groups to continue online as the accessibility and flexibility is more suitable to their needs, with one consumer saying “thank you so much for this series, it has been very helpful”.

While reliance on technology solely reduces access for some of the population, peer support can be useful to assist people to overcome some technology barriers.

Engaging via video conferencing increases accessibility for some of the population, and a key factor to successful engagement is regular, short sessions.

Online delivery of webinars/meetings/groups will continue as an option to allow access as CoMHWA works towards a ‘new normal’. The lessons learnt from this period will be used to ensure the broadest access and distribution of information, resources and supports.

 

Carers WA

When Carers WA had to cancel their face-to-face services, they relied on phone, Skype, email and Zoom to stay connected with their community.

While there was a good response to this change, many were keen for specific services, such as social support groups, education and training sessions, to resume in a physical format.

On an organisational level, Carers WA learned that while working from home is technically possible for some roles, it didn’t work as well for others. However, the organisation plans to consider more flexible working for the future, maybe mixing office and home working where practical.

Looking to the future, Carers WA note that many of their services are provided remotely as the norm so these will continue. While they don’t plan any significant changes in service delivery, they will have more scope to hold meetings with others service providers or interstate people and organisation online through Zoom.

 

Health Consumers’ Council

 

Our biggest priority over the last few months has been to mitigate the risks to our staff and community, while maintaining a focus on connection. Like many around the country we took our work online, connecting with our own team, consumers and WA Health through Zoom, Microsoft Teams, Scopia, and other online platforms.

As everyone began to adapt to a new way of doing things, our engagement team began to upskill in hosting engaging, interactive online events, and we hosted introductory sessions to help consumer navigate Zoom.

We heard that opportunities for health consumer, carer, community and family representatives to connect with each other, with the health system and with organisations like us became even more important, as many in-person opportunities were postpone or cancelled. We quickly convened a COVID-19 community of interest, so that our executive director Pip Brennan could contact a ready source of consumers and carers for surveys, feedback, consumer opportunities and online forums.

Our fortnightly online drop-in sessions brought a lot a value to the community, providing the space for an informal, online get together with anyone involved or interested in consumer, carer, or community representation. In particular, they gave us a chance to involve people in rural areas who may not otherwise have been able to make it to a consumer event in Perth. Overall, we had about 120 participants across the five fortnightly sessions.

We listened to what we were hearing from consumers and their questions around COVID-19 and got involved in more online events. Our fortnightly Fireside Chats with WA health experts allow for interactive Q&As with the likes of the Director General David Russell-Weisz, and Assistant General of Clinical Health Excellence, James Williamson.

We continued to work closely with health consumer peaks across Australia, partnering with Health Issues Centre for a series of online forums exploring COVID-19 and Australia’s recovery from the pandemic. These workshops were attended by several hundred people and featured guests like Victoria’s Chief Health Officer, Professor Brett Sutton and Deputy Chief Public Health Officer and Executive Director Health Protection and Licensing Services, Dr Chris Lease.

Throughout it all we used social media and email to keep in regular contact with our community, not just about our own engagement activities but with reliable COVID-19 updates, consumer opportunities, and other ways to stay connected with community during challenging times.

This sense of connection and being able to reach a wider audience has been something we will carry with us as we establish new ways of working in the wake of COVID-19. We’re committed to finding a good balance between in-person and online events that removes as many barriers as possible for those wishing to attend, and will continue to look at ways to make our engagement activities more accessible to all.

 

Befriend

*Befriend is a West Australian community development organisation sparking inclusive, connected communities. They operate community building and consulting services, developing the capabilities of local residents and community organisations to nurture connection and belonging for all people – and have a unique perspective on community connection.

Some of the most adverse effects of COVID-19 on West Australians were the social effects. Physical distancing precipitated social disconnection from each other, at a time when we needed our relationships more than ever. As an organisation that fundamentally exists to nurture connection, we invested to pivot and scale our operations in response to the rapidly elevated community need for social connectedness.

Our community builders pivoted our work in supporting inclusive social networks from place-based to digital, supporting local residents to host online social gatherings that offered a relevant alternative to help people stay socially connected. Our consultants acted in an advisory capacity to support a number of community organisations and local government authorities with designing contemporary service models that would support social and community connectedness within the constraints of physical distancing. For the Befriend Team, it was not a matter of ensuring continued support; it was a time to step up to the call of our purpose.

It was affirming to have so many other people realising what we’ve known all along, what we advocate for at the heart of our work at Befriend – that connection and community are at the heart of community wellbeing, and are essential in sustaining a thriving society. Services can only do so much; it is the strength of our relationships with each other in community that are fundamental to our collective wellbeing.

It’s been a time for community members to realise the value and importance of all members of society – of our elders, of people with diverse abilities, of people from culturally and linguistically diverse backgrounds.

It’s been a time to learn about and reflect on the power of technology in sustaining our connectedness, and to work on our relationship with technology, finding new and different ways to use it whilst managing the ways that it can constrain our connectedness and wellbeing.

As we move beyond the turbulence of recent months, one of our primary objectives at Befriend is to capitalise on the increased awareness of the importance of social connectedness and the increased motivation for community contribution, furthering our community building work to mobilise and support more citizens to become active in nurturing connected communities.

 

*This article was originally published in Health Matters 

Experts by experience – mental health peer support

In our previous Health Matters focused on self-advocacy and peer support, Rhianwen Beresford, Convenor of the WA Peer Supporters’ Network, spoke about a vision for peer support where every Western Australian knows what peer support is and can access it if they want to.

Peer support happens across all sectors and walks of life. If you’re using your own experience to help someone through a similar experience, that’s peer support. Mental health peer support offers a whole range of benefits – friendship, empowerment, lessening of stigma, increased acceptance, and shared insights about life with mental health experiences.

On a larger scale, mental health peer support can have a positive impact on the way society views and treats mental health, leading to improvements in service and more person-centred, trauma-informed responses.

Carli Sheers is an active consumer representative and mental health advocate, and we spoke to her about the importance of peer support.

Why is mental health important to you and what made you want to become active in this space?

I recovered from mental health issues through accessing peer support many years ago, and have worked in the mental health sector in various roles for 13 years. My experience and skills as a Consumer Consultant have grown through active participation in the sector and Membership of Mental Health Australia’s National Register. With intention, I developed an extensive network of mutually beneficial collegial relationships and can speak from beyond my own personal experience with their consent. I am lucky to have access to a peer mentor who I admire, respect and value. I became active in the mental health sector to raise the expectation of recovery, reduce stigma and discrimination, and increase my employability as employment is an indicator of health. I also invested in my education and founded a mental health education and training consultancy business last year.

What are the major benefits of mental health peer support, and why does it play such an important role alongside clinical treatment options?

Peer workers undertake a variety of functions in diverse settings, from service delivery to policy making to funding of services. Personal lived experience is an essential job criterion, and other competencies include a person’s overall life experience, employment and education history, emotional maturity and ability to engage and communicate. Peer workers provide an effective and high-quality intervention that can be either complementary to clinical service or, in some situations, effective as a stand-alone intervention. They see challenges as growth and learning opportunities, not as crises.

Mental health peer support workers are experts by experience and provide a specialist knowledge base that can transform individual lives and systems of care. They are recognised for using their insights and expertise from their personal expertise to inform their work, and can walk alongside people who have experienced similar distress and support them without trying to ‘fix’ their situation.  It is about engaging people with mental health issues as the central actors in their management of their mental wellbeing, helping them to find meaning in their life experiences, and guiding people’s journeys towards a contributing life. This was my experience when I accessed Grow*, a national consumer mental health organisation.

Major benefits of mental health peer support include helping people to believe in themselves and re-build their lives, discover their own solutions and develop a sense of control, master their emotional strengths, work towards self-agency and self-advocacy, enhance the quality of lifestyle and personal choices, and finding their strengths, capabilities and possibilities. Peer workers influence much needed cultural change in services and workplaces, decrease people’s need for costly acute services, and are effective in engaging people who have been difficult to reach and not benefited from traditional services.

(Source: Peer Work in Australia. A New Future for Mental Health. 2018)

In the wake of COVID-19, many people are finding themselves on a new mental health journey. As someone who advocates in this space, what advice would you give?

Navigating the mental health system can be complex, as there are many pathways for care and support. It is important to ask for help, and I encourage people to see their GP (or access a Telehealth appointment) if they are not coping due to COVID-19.

I also refer people to the WA Mental Health Commission’s website as a reliable source of information about supports and services. Consider joining a support group via ConnectGroups (https://connectgroups.org.au/), who are the peak body for support groups in WA.

Do you have any advice for those interested in becoming a mental health consumer advocate?

Life-long learning is important to being an effective mental health consumer advocate.  I encourage people to access Consumer Representative training via Health Consumers’ Council and Consumers of Mental Health WA+.

 

*Grow is a community-based organisation that has helped tens of thousands of Australians recover from mental illness through a unique program of mutual support and personal development. To find out more, visit https://www.grow.org.au/

+CoMHWA currently hosts the WA Peer Supporters’ Network (WAPSN), a network for and by peer supporters in Western Australia. You can join or find out more by contacting info@peersupportwa.org.au or contact (08) 9258 8911.

This article was originally published in Health Matters

Feedback and complaints – How and why you should share your experiences

Feedback is a good way of gaining information on areas of strength and areas that need to be improved. In healthcare, feedback can be a key way to improve patient safety and ensure ongoing quality improvement.

Whether your experience was good or bad, sharing your feedback could help raise awareness and lead to improvements.

But we know giving feedback or making a complaint isn’t always easy. In late 2019 we were commissioned by the Department of Health to support them in seeking consumer input about the process of making a complaint and giving feedback. Many people commented on how difficult it can be to find out how to give feedback or make a complaint.

Many people also responded that a prominent reason for not giving feedback was simply that they were not asked, saying there was an opportunity to increase ways to give feedback “in the moment”. People noted that in hospitality, you are asked for feedback at various stages in the process, and that this gave people an opportunity to address any issues when they arise. Ways of making it simpler to give feedback were discussed, including looking at how to use technology to encourage feedback from a wide range of people – for example, kiosks where people can quickly note 😊 or ☹ could help a service get a quick idea of how it’s doing, as well as making it easier for consumers for whom English may not be a first language to give feedback. We really encourage consumers to give feedback even when it’s not asked for, because feedback is the backbone of safety and quality improvements.

You can also keep an eye out for feedback forms that you may be given if you go to hospital (they may be in a folder near the bed) and speak to the person providing your care about how you can give feedback. By taking a look at our self-advocacy resources you can prepare for your doctor’s visit or hospital stay, which may help you feel more confident to ask questions and provide feedback.

You can give feedback verbally, in writing, by speaking directly to health service staff, to consumer or patient liaison staff, to Aboriginal Liaison Officers, or if given a follow up call after discharge from hospital. Many people commented that making a complaint, or sharing some positive feedback can feel like an extra thing to do after you’ve finished at a health service. One way that many people felt was a relatively easy way to give feedback was via Care Opinion Australia (previously known as Patient Opinion – see below).

While many people highlighted barriers to giving feedback that were discussed in these sessions, in the workshop with Aboriginal people, many people described how their experience of racism in the health system impacted on the likelihood and way they give feedback or make a complaint. We heard strongly there is much that needs to be done to ensure feedback mechanisms are accessible and culturally safe for Aboriginal people and will continue to advocate for this.

Many people spoke of how valuable it can be for people to have access to independent support to make complaints to health services. Health Consumers’ Council provides an individual advocacy service, as do a number of organisations like People With disability WA and Carers WA, but we know there are more people who could benefit from this support than are able to access it currently. Again, increasing access to advocacy support is something we will continue to argue for.

We’ve gathered some resources to help guide you on where and how you can give feedback. You can also call us on 9221 3422 or 1800 620 780 (country freecall) for advice on the best way to make a complaint, or for support in making a complaint.

Care Opinion Australia

Care Opinion Australia, previously known as Patient Opinion Australia, is an independent online platform for people to provide feedback on services.

At www.careopinion.org.au anyone can share their stories about their experience of care. The site covers health and aged care, and community services in Australia, giving service users, their families and carers the opportunity to publish their personal experiences, good or bad, of the care system.

Care Opinion works so well because it gives you a public, but anonymous, way to voice your experience about the services you use. The right people at the service or provider will see your experience and have the chance to respond.

Care Opinion is safe, confidential and independent of services and authorities. Additionally, reading the stories that other people share on Care Opinion may help you choose the best care providers.

If you are unable to write your story on the website, you can speak to Care Opinion in confidence on the phone by calling 1300 662 996 (mobiles may pay charges).

“A couple of years ago my daughter was admitted to hospital. Unfortunately there were some issues that arose during her stay and treatment, systemic issues that meant I didn’t really know who to address the feedback to. I had known about Patient Opinion [now called Care Opinion], that her experience would be public and that the hospital would be required to respond publicly. It seemed like a good way of raising the issues that we had, and it was. We received responses from the EDs of the services involved, which meant that the people at the top were aware of what had happened and were willing to make changes. Patient Opinion gave us the chance to tell our story, for it to be read by people who have the power to make changes and for us to feel like we were heard.”

How to make a complaint

Feedback can be a powerful way of improving the health system for yourself and others, however we recognise it can sometimes be a difficult or emotional path to travel. Health Consumers’ Council can support you through this process.

We have a step-by-step guide to making a complaint that you can find here.

Our page on self-advocacy resources also includes a sample complaint letter that you can download, a template for a Freedom of Information Request, and contacts for Freedom of Information requests.

The first step in making a complaint is to be clear about what the problem is and what exactly you are making the complaint about. This is sometimes called identifying the key issue.

You may then want to call the health service to ask about their complaint process (how you would go about making a complaint). Avoid going into details of the complaint unless you are sure the person you are speaking to is the one who receives complaints.

In some cases, we recommend making your complaint in writing. That way, someone becomes responsible for writing back to you, and your complaint is more likely to find its way to the right person or place for action. Always phone the service first to find out the name and title of the person you should write to. When submitting a complaint in writing, be firm but polite and keep your message to the point. If you do not have access to a computer, do not be put off – handwritten letters are fine.

Most, if not all, complaint agencies will allow you to have an advocate (someone who can act on your behalf) to help you put your complaint into writing if you are not confident about doing so yourself.

Health Consumers’ Council provides an advocacy service to assist health consumers in making complaints. We are an independent consumer advocate organisation and are able to support you through the process.

 

*This article was originally published in Health Matters 

The art of compassion in healthcare

By Dr Andrew Leech FRACGP MBBS BSc DCH

In 2019, Dr Andrew Leech was recognised for his commitment to patient-centred care as winner of the Health Consumer Excellence Award for Compassionate Care. Dr Leech is passionate about family health and the integral role of a GP, and believes GPs are in a unique position to offer support to patients. Here, he talks about the art of compassion in healthcare.

How do patients like to be understood and treated when they see a medical professional?

We are generally taught, as doctors, that taking a good history about symptoms, performing a physical examination, and offering evidence based, relevant treatment, makes a good doctor.

I now realise that medicine is a true blend of art amongst all the science. The balancing act between really understanding the patient as well as treating them is not an easy one. Medical schools are trying harder to teach this concept, but it comes with time, experience and feedback from your peers and from patients themselves.

The skill of understanding the person as a whole, and not just for their presenting complaint, probably takes a lifetime to master. We are complicated beings with many facets to what drives us. We depend on countless external and internal stimuli to function and thrive.

Despite all this, I have learnt that there are some beneficial skills that give patients hope, even when it may appear that all hope is lost. Active listening is a good start, but listening with empathy, understanding and compassion helps us to not only grasp the problem and build a therapeutic relationship, it helps guide treatment.

Patients definitely open up more when they are faced with some level of kindness. These may not seem like skills as much as a core human emotion that we all have the ability to possess. But the problem is we are busy, and amongst chaotic days filled with challenges it can be mentally fatiguing being a doctor, and therefore the emotional side of medicine can be stripped away.

I often feel we owe more than just our attention to patients. The Latin origin of the word doctor is ‘to teach’, and this rings true as we try to help educate our patients on the human body and why something might be changing for them. I think doctors can get caught up using quite funny language. We forget that this makes little sense. I am often caught out with this, only the other day the patient looked puzzled when I said they had a ‘carotid stenosis’. Part of the art of medicine is in the communication and wording of how we educate, therefore it may take different words to get a point across, diagrams, handouts, even seminars or workshops, online resources and social media.

Patients are becoming increasingly ‘educated’ in this era of information technology. I feel my role in this is to weave through the information and present the most logical, evidence-based solution. Adding compassion to this discussion means patients often feel ‘you get them’, or at least that you’re listening. We may not have all the answers, but if we walk this journey together then life might be just a little bit easier.

 

*This article was originally published in Health Matters 

Championing the patient experience

A Q&A with The Beryl Institute President and CEO Jason Wolf

Jason Wolf is a passionate champion and expert in patient experience improvement. As President and CEO of, Jason has led the growth of the organisation as the leading global community of practice and thought leader on improving the patient experience and establishing the framework for the emerging profession of patient experience.

In the lead up to Patient Experience Week 2020, Jason spoke to us about the importance of working to continually improve the patient experience.

 

How and why did Patient Experience Week come about?

The first Patient Experience Week was held in April 2014. The focused week was inspired by members of The Beryl Institute community to celebrate healthcare staff impacting patient experience. Taking pause during this week provides a focussed time for organisations to celebrate accomplishments, reenergise efforts and honour the people who impact patient experience every day. The first annual event also encompassed the former Patient Advocacy Week sponsored by the Society of Healthcare Consumer Advocacy (SHCA) after SHCA integrated with The Beryl Institute in January 2014.

What has the uptake of the movement been like around the globe?

PX Week has appeared around the globe in a number of ways, from the great celebrations championed right here in WA by the Health Consumers’ Council to efforts in the UK to recognise Experience of Care Week. While celebrations during Patient Experience Week are an underpinning of this movement globally, its observance serves as more of an acknowledgement of the work it takes to effectively champion and sustain experience efforts across healthcare settings globally. What may be more significant than just the celebration of Patient Experience Week is the acknowledgement of healthcare consumers themselves, as reported in our study Consumer Perspectives on Patient Experience (2018).1 This study included voices from Australia where 91% of consumers confirmed patient experience is extremely/very important to them overall and is significant to the healthcare decisions they make. This means that as we celebrate Patient Experience Week, every day provides an experience opportunity and comes with a clear expectation from those served by healthcare systems around the world.

In your view, what areas within health care have the biggest impact on patient experience?

I would suggest ALL areas of healthcare impact the experience people have. It is what led us to underline the importance of an integrated view of experience that acknowledges quality, safety, service, access, outcomes and more are all part of the experience one has in healthcare. It is not bounded by the walls of a clinical encounter.

When looking at healthcare through the eyes of the patient or family member, we see that experience is directly affected by quality, safety and service efforts, and influenced for some by cost and broader public (population) health issues that play a role in both clinical and organisational decision making. From an operational perspective, quality, safety, service, cost and outcomes may be distinct areas of work, but they are not usually seen as distinct by the individual in a patient bed or at the bedside, in a waiting room or in the surgery suite, in a residence or in the recreation room. Although organisations may build efforts to address and improve each of these areas, the consumer of care in most cases does not distinguish between a quality encounter, safety protocol or service intervention as separate experiences, nor does he or she view cost—or, for that matter, broader population health issues that influence decisions—as separate.

In a similar light, we introduced the Experience Framework2 last year to further reinforce the integrated nature of experience in healthcare today. The Experience Framework includes eight strategic lenses through which any experience endeavour should be framed. It reinforces the integrated nature of experience efforts and provides a means to identify where you are excelling or may have opportunities to address. It also offers a means by which knowledge, resources and solutions can be aligned.

The eight lenses and the rationale for why they are essential to the experience conversation are:

  • Culture & Leadership: The foundation of any successful experience effort is set on who an organisation is, its purpose and values, and how it is led.
  • Infrastructure & Governance: Effective experience efforts require both the right structures and processes by which to operate and communicate and the formal guidance in place to ensure sustained strategic focus.
  • Patient, Family & Community Engagement: Central to any experience effort are the voices of, contributions from, and partnerships with those receiving care and the community served.
  • Staff & Provider Engagement:  Caring for those delivering and supporting the delivery of care and reaffirming a connection to meaning and purpose is fundamental to the successful realization of a positive experience.
  • Environment & Hospitality: The space in which a healthcare experience is delivered, and the practices implemented to ensure a positive, comfortable and compassionate encounter must be part of every effort.
  • Innovation & Technology: As a focus on experience expands, it requires new ways of thinking and doing, and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care.
  • Policy & Measurement: Experience is driven and influenced by external factors and systemic and financial realities and requires accepted and understood metrics to effectively measure outcomes and drive action.
  • Quality & Clinical Excellence: Experience encompasses all individual encounters and the expectations they have for safe, quality, reliable, and effective care focussed on positively impacting health and well-being.

Through the Experience Framework, we can create a more efficient connection of needs to knowledge, strategies to resources and opportunities to solutions, expanding the collective global dialogue through a common structure for focus and action. In having a means to align efforts at a macro level, we are well-served to drive specific efforts and address specific needs to the level required in any healthcare endeavour.

What key messages would you share with health service providers around patient experience?

I have written about this often and would suggest a few key points I offered both in our most recent research paper, The State of Patient Experience 2019, and in our 2018 study, To Care is Human. In The State of Patient Experience 2019, I wrote:

In moving to the future of healthcare grounded in experience, this calls on us to recognise and act on a few fundamentals, many that have been essential to our focus at the Institute and some we have discovered in our constant work to improve the patient experience and elevate the human experience in healthcare.

  1. Patient experience is not something healthcare does, it is who healthcare is. It is when experience is simply seen as a thing to do, a box to check in a complex healthcare world, that its possibility is immediately weakened. Experience happens regardless of plan or process. It is who a healthcare organisation is and how it is perceived by others. It is incumbent on all in healthcare to build organisations that realise that every action, every encounter and every interaction create an experience for all involved. The choice then becomes to consistently create moments that will ensure the experience is one we aspire to offer.
  2. Patient experience is driven by all we do and, therefore, every effort must be approached with an integrated view of how it will impact the overall experience we provide. This is the essence of the experience framework itself. It is in understanding that all the elements it includes, the eight strategic lenses, while often operated distinctly in healthcare, must be seen as one integrated set of actions in ensuring an aligned and effective effort to drive experience and therefore the outcomes we look to achieve.
  3. To succeed externally, we must focus internally. The ideas that culture matters or that how we treat those who work in an organisation will impact the experience of those it serves are not new, yet healthcare leaders have been slow to turn this understanding into action. It is not an accident that the data from 2015 to today reveal a rapidly growing awareness of communication and employee engagement as the primary path to experience success. In fact, as revealed in the 2018 study To Care is Human, healthcare units who achieved high performance in experience all attested that after getting communication with patients and families down, the next critical element was to ensure the engagement, teamwork and well-being of those working in healthcare.3 If organisations are not willing to work on themselves first, they will never ultimately achieve the experience success they seek.
  4. A commitment to experience will not (and must not) ever end. In hearing from many organisations over time since the first state of patient experience study in 2011, one of the greatest issues raised is that of sustaining success. This raises an opportunity for all organisations to consider. While many organisations initially related success to survey outcomes and percentile rank, they too seemed to feel that once they hit a certain level, they had achieved what they could. Many of those organisations assumed this achievement would continue; they shifted their focus or took their foot off the gas on their efforts. All of this led to diminished scores, questions about efforts, frustration and even more significant actions in changing staff or redesigning process. These organisations thought experience was something to be achieved. That presents a false consideration, as that idea means it is done, over, accomplished, but the need to ensure the best in experience never truly ends. It is about a relentless pursuit of excellence, about consistent delivery of intent and an unwavering commitment to the human experience at the heart of healthcare that will lead to the outcomes all aspire to realise.

How are patient experience and health outcomes related?

I would simply add here that if we see experience as the integration of quality, safety, service, access and outcomes, then experience is a measure of the outcomes achieved. If we help people get better through improved care, that outcome is their experience. If we help them to live the remainder of their life, whether days or decades, with dignity and respect, that is their experience, and an attempt to distinguish experience from that undermines all we aspire to in healthcare.

Yes, there is prevailing research that shows high experience scores (for instance, represented by survey scores in the US) leads to better quality outcomes4, but this research only looks at experience as measured by the scores and does not acknowledge all we addressed above. The reality is that when people are engaged in care, feel listened to, are communicated to in a way they can understand and are treated with dignity and respect – all primary identified needs of healthcare consumers1 – then we tend to see better outcomes. The discussion of experience undermining quality is a dangerous and misguided conversation that still relegates experience to satisfaction. We are not addressing how happy people are in tackling experience, but rather we are committing to their health, their well-being and their humanity and are committing to the best in outcomes for all we serve. Thus, experience is inextricably linked to outcomes. They are more than related; experience is the ultimate outcome of safe, quality, reliable and human care that all patients and families deserve.

What does the future look like when it comes to patient experience?

We are now in the midst of an inquiry on the future of human experience over the next decade as a call to action and an identified opportunity for healthcare organisations globally. I would encourage you to read and react to the dynamic and provocative path we offer, consider ways in which you can engage, where you can add practice or evolve systems and processes and how each of us can contribute to the future of human experience we all aspire to see and know all in our care deserve.

The Future of Human Experience 2030 will be available from the Beryl Institute in late April.

 

 

References

  1. Consumer Perspectives on Patient Experience 2018 (https://www.theberylinstitute.org/page/PXCONSUMERSTUDY)
  2. Experience Framework: https://www.theberylinstitute.org/page/ExperienceFramework
  3. To Care is Human: The Factors Influencing Human Experience in Healthcare Today (https://www.theberylinstitute.org/page/ToCareIsHuman)
  4. How U.S. Health Care Got Safer by Focusing on the Patient Experience. (https://hbr.org/2017/05/how-u-s-health-care-got-safer-by-focusing-on-the-patient-experience)

*This article was originally published in Health Matters 

Digital Health – where are we at?

By Pip Brennan, Health Consumers’ Council Executive Director

My Health Record

Since January 2019 when the opt-out period ended, 90% of Australians have ended up with a My Health Record. Like all our state counterparts, we were funded by the Australian Digital Health Agency to circulate information materials on My Health Record via our networks. We have noted that some social media posts have attracted concerns from consumers, and have communicated these to the Australian Digital Health Agency.

We also undertook a survey to explore the issues important to consumers, and gain an understanding of real-life experiences of using My Health Record. We are currently compiling the results of this survey, and you will be able to find them on our My Health Record web page soon.

On 11 December the CEO of the Australian Digital Health Agency, Tim Kelsey, announced his resignation. A new appointment will be made early next year.

WA’s new Digital Health Strategy

As noted elsewhere in this edition, this strategy was released in October 2019, almost a year to the day of the last stakeholder engagement HCC was able to be part of. Now the Strategy has been released, it’s clear that the main goals require an electronic medical record. The scale of this undertaking is not to be under-estimated. The WA Health Information and Communication Technology Consumer Reference Group re-convened in November 2019 and there are hopes for more robust engagement and a co-design process with consumers, clinicians and administrators to drive this project forward in the way it needs to go.

Data and Privacy

Meanwhile, WA’s Department of Premier and Cabinet has completed the Privacy and Responsible Data Sharing consultation, and submissions received are now being analysed and legislation drafted. It may surprise you to know that we are the only state without privacy legislation.

I contributed to an independent submission which was supported by Professor David Watts, former Victorian Privacy Commissioner, and Dr Bridget Bainbridge, whose inputs were kindly supported by the Minderoo.

The submission argued for an innovative approach to the drafting, rather than merely “cutting and pasting” other state’s legislation, first written in the 1980s. Our world has changed beyond recognition since then, and Europe has led the way in developing the General Data Protection Regulations which seek to uphold civil rights. Th argument was made to aim for something along these lines that will allow us to more easily participate in international research.

Data is the new oil

It has often been noted that three enormous enterprises, Amazon, Google and Facebook, do not charge for their products. That is because the data they harvest from their platforms is far more valuable and marketable than membership fees. It is vital that as citizens we do not “give away the farm” when it comes to our health data. There have been alarming precedents in other countries where health data has been swapped for “innovation” – so that the costs of developing a platform, for example, are not met by the public purse. But what is the cost of this in terms of loss of privacy, in leaving ourselves open to having our data re-packaged and sold back to us?

Meanwhile, there is a confusion in the public mind about how much data is shared between government agencies. There is an expectation that data is shared much more than it really is. The excuse of “privacy” is often invoked by government agencies keen to control what information is shared and avoid contentious issues reaching the light of day, or stymie the ability of people to seek redress.

While in WA it was noted that our lack of privacy legislation is hampering data sharing, in all other jurisdictions where privacy legislation exists, it is invoked as a reason not to share data. As always, culture is a key driver of how policy and legislation is enacted.

In Australia there is no independent, publicly funded app for My Health Record. There are three commercial providers who provide apps, and as we saw in 2019 with the Health Engine debacle, in some states our data was being on-sold to third parties – which consumers had consented to with one click, without any real understanding of what we were consenting to. The phenomenon of signing away our rights is endemic. The Norway Consumer Council worked out that it would be quicker and faster to read the New Testament than it would be to wade through the terms and conditions of 33 apps on your average smart phone.

What to do?

As always, a “buyer beware” approach is important. If something is free (Facebook for example), then you’re for sale. Many of us make this call because what we receive is worth the (largely invisible) cost of obtaining something we want right now, which is the functionality of what the app offers.

 

Does this topic interest you? Would you like to stay in touch with projects and initiatives in data and IT, email us at info@hconc.org.au with Digital Health as the subject line.

You might also want to listen to this episode of Big Ideas exploring this complex topic.

 

CroakeyGO – Walking and talking for collaborative health content

Social journalism project Croakey is taking a unique approach to gathering consumer input on health with CroakeyGO. The project brings people together to walk and talk about health issues and to collaboratively produce social media and other editorial content.

In August, North Western Melbourne Primary Health Network (NWMPHN) supported a mental health CroakeyGO, #NavigatingHealth, following the footsteps of a patient journey through the mental health system. Consumer feedback gathered during the partnership project will help guide mental health commissioning and inform the PHN’s Regional Plan for mental health.

The event involved about 100 people from diverse backgrounds. The group stopped at four different locations: a public hospital ED, an Aboriginal health service, a community health service, and a general practice. It looked at the issues faced by different parts of the mental health system and how a person’s care journey is impacted by where they first seek care.

There were speakers at each stop, but importantly all participants were given the opportunity to be interviewed about their own issues and concerns. This was supplemented by hundreds of people engaged with the event and conversations via social media.

“First and foremost, we wanted to listen to our community about what they think is needed in our mental health system,” Mary-Anne Toy, NWMPHN Director of Strategic Relations, said.

“What was working well, what was not working, and how we could make the system fairer and better. We wanted to get as many perspectives as possible. We also wanted to share our work and approaches and build new connections so that we can work together to create better care for our community.”

NWMPHN recognised that collaborating with CroakeyGO would have the potential to have greater impact, reach and engagement than previous meetings or consultations.

“It went even better than we hoped. We had twice as many people as we’d calculated would turn up in real life. And people loved participating, from our own staff to consumers, carers, service providers and academics. From people who knew us to people who didn’t really know what a Primary Health Network was but turned up because they cared about our mental health system,” Ms Toy said.

“What surprised us was how much our own staff loved the event.  It reminded everyone that we’re all in it together and how important it is to get out ‘on the ground’.

“Listening to people at the four partner stops talk about what they did was illuminating – even for those of us working in the field, there’s so much we don’t know about the system and hearing people’s stories is always powerful and humbling.”

Victorian Aboriginal Health Service (VAHS), St Vincents Hospital, Drummong Strett Services and Carlton Family Medical photographed at Fitzroy on Thursday,01 August 2019 in Melbourne, Australia. (Norm Oorloff/1826 )

 

This article was originally published in Health Matters 

Communication and kindness: Using my voice as a consumer and carer

By Deb Letica, consumer representative

Life is an interesting journey that unfolds before us, sometimes leading us to opportunities that we never considered.

I have mostly enjoyed a good quality of health so far. It was not until I had some health issues such as Graves’ Disease, over prescribed thyroid medication, emergency appendicitis and discovering my much-loved younger brother had a rare genetic neurogenetic disease called a leukodystrophy that I became passionate about health.

My lived experience motivated me to become involved in the health sector, starting out as a member of the Consumer Advisory Council at my local hospital.

I attended Health Consumers’ Council consumer training to understand how the health system works and why my voice as a consumer/carer was important. I learnt how to use my experience to have a strong voice for systemic improvement in the health system.

From those small beginnings I have grown in confidence and contribute in a systemic way at a state level with the Department of Health (DoH), South Metropolitan Health Service (SMHS), and WA Primary Health Alliance (WAPHA), and on a national level in training health professionals.

I’ve learnt how the systems operate, the rigorous safety and quality standards, the NSQHC Standards, accreditation of our hospitals, and the importance of training our health professionals of the future. On a personal level I’ve learned how to better navigate the sector, how to advocate on my own behalf and on the behalf of people I care about.

Integrated care is important to me. I think that many vulnerable people fall through the gaps when they are the ones that can teach us so much more. Even when we are diagnosed with a chronic health issue trying to navigate the two systems when you’re not feeling too well can be overwhelming. In fact, it was a complete surprise to me to discover that integrated care wasn’t the norm!

Communication is one area that needs improving when it comes to consumer engagement. Consumers/carers just want CARE (Communicate, Access, Respect, Experience) for a good patient experience. The key to enabling this to happen is kindness. Kindness enables conversations to happen about things that matter to us, what’s important to us. Put us at the centre of the care team and please all communicate with each other!

Kindness doesn’t cost anything, but it can make a profound difference to others. It gives consumers and carers the confidence to ask questions, increase their understanding and health literacy, and it makes them partners in the planning of their care.

Kindness is life changing – it builds trust which then builds collaboration and partnerships. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.

Kindness is the enabler for everything that matters to each of us.

I strongly encourage everyone to become involved in the health sector as a consumer/carer rep.  It’s important to give back to our community, to make the world a better place for us all.

Deb Letica is in a hopsital room, holding a file and speaking to another woman

Photo of Deb Letica by SMHS

*This article was originally published in Health Matters 

Breast Implants – national recall

CONSUMER ALERT – The Therapeutic Goods Administration (TGA) continues to review and assess breast implants available in the Australian market. For more information and the latest updates, see the TGA’s online breast implant hub.

  • On 2 August 2019, the Allergan company voluntarily recalled their un-implanted Biocell macro-textured breast implants and tissue expanders due to a risk of breast implant associated anaplastic large cell lymphoma (BIA-ALCL), a rare cancer of the immune system. Another company also cancelled their product (Emergo Airxpanders Aeroform tissue expanders)
  • On 26 September 2019, the TGA published its decision to recall and suspend a number of other breast implants and tissue expanders. The full list of recalled and suspended products can be found on the TGA’s Breast Implant Hub.

The TGA has developed a fact sheet for consumers regarding the Allergan recall. The TGA fact sheet states that:

If you have symptoms such as pain, swelling, a rash or a lump in your breast, armpit or elsewhere or you are not sure about changes in your breast, please discuss these with your general practitioner (GP), surgeon or other appropriate medical professional as soon as possible.

Patients can also call HealthDirect on 1800 022 222 for further information.

World Patient Safety Day

Today, 17th September, is World Patient Safety Day – a day where 194 countries come together to recognise patient safety as a global health priority.

The slogan for the day is “Speak up for patient safety”, to increase public awareness and engagement, enhance global understanding, and spur global solidarity and action.

So what can you do to speak up for patient safety?

If you are a patient or caregiver

  • Be actively involved in your own care
  • It is good to ask questions; safe health care starts with good communication
  • Be sure to provide accurate information about your health history

From our work with health consumers, and from the personal experience of some of our staff, being prepared to speak up when you know something is not right with your care is a critical element in patient safety – even in the face of health professionals not immediately agreeing with you.

It is only by advocating for yourself, learning as much as you can, and feeling OK about asking questions that you can get the best health care. There are resources available to help you speak up and become more active in the important decisions around your healthcare.

The Choosing Wisely “5 Questions to ask your doctor” is a great prompt for starting important conversations with your doctor about your care.

The Question Builder tool can help you prepare for appointments. By creating a list of questions that you can print or email to yourself, you can get more out of your time with your doctor and remember what you want to discuss.

If you are a public health advocate or from a patient organisation

  • Promote patients’ voices in their own safe care
  • Advocate for safety in health care as a requirement

We have compiled these Self Advocacy resources that you may wish to share to help others advocate for themselves.

If this is an area you’d like to get more involved in, take a look at our Consumer Representation training. Consumer Representatives play an integral role in the Australian health care system. They provide vital information and ideas from a service user’s perspective, to health services and government committees. We can help you use your experience as a patient or carer to create a better health system.

If you are a health worker or health care leader

  • Engage patients as partners in their care
  • Work together for patient safety
  • Ensure continuous professional development to improve your skills and knowledge in patient safety
  • Create an open and transparent safety culture in health care settings
  • Encourage blame-free reporting of and learning from errors

If you are a policy maker

  • Investing in patient safety results in financial savings
  • Invest in patient safety to save lives and build trust
  • Make patient safety a national health priority

If you are a researcher, student, academic, or professional institution

  • Generate evidence to improve patient safety, your research matters
  • Encourage research in patient safety
  • Incorporate patient safety in educational curricula and courses

If you are from a professional association, international organisation or foundation

  • Promote patient safety for achieving universal health coverage
  • Provide learning and development opportunities for patient safety