Wednesday, July 27, 2011

Reflections on Patient Centred Care

In the last few months it seems that many health services in Australian have caught up with the concept of patient centred care and we hear the term bandied about all over the place.  Over the last three weeks I have seen six different onion charts that represent patient centred care.  (I will endeavour to post links to these over time.)  

Consumer organisations have been talking about these principles for decades. The medical profession have been considering the benefits of this approach for over a decade. I certainly remember a clinician commenting to me in 2001 that they thought patient centre care would evolve to become part of the way clinicians think, just as evidence-based medicine has become the accepted norm.  

Health services in are adopting the concept as a key driver for service delivery in terms of improving outcomes for consumers as well as improving efficiency and effectiveness of health services.  The attention of the needs and preferences of consumers is certainly welcomed and consumer organisations are well placed to work with consumers, health services and our communities to achieve the objective of patient centred care.  Here in Australia we are a little behind the UK and the US in terms of establishing indicators for what constitutes patient and family centred care. Very few services report against patient experience indicators ... but that will change.

The Australian Commission on Safety and Quality in Health Care (ACSQHC) has released their paper on Patient Centred Care  and consumer centred care features in the Health Care Services Standards that are currently before AHMAC for consideration.  

What is patient centered care?
  • Providing care that is easy for patients to get when they need it. Making sure that healthcare staff respect and respond to patient choices, needs and values. Forming partnerships between patients, their family, carers and healthcare providers.  ACSQHC
  • providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions The Kings Fund
  • one aspect of health care quality, as important as care being safe, clinically effective, timely and equitable  The Kings Fund
  • the essence of patient-centred healthcare is that the healthcare system is designed and delivered to address the healthcare needs and preferences of patients so that healthcare is appropriate and cost-effective  International Alliance of Patients' Organizations (IAPO)
  • the essential theme is the importance of delivering healthcare in a manner that works best for patients.  In a patient-centered approach to health care, providers partner with patients and their family members to identify and satisfy the full range of patient needs and preferences. Planetree
  • The Seven Attributes of Patient-Centered Care Superb access to care, patient engagement in care,  clinical information systems that support high-quality care, practice-based learning, and quality improvement, care coordination, integrated and comprehensive team care, routine patient feedback to doctors, publicly available information  The Commonwealth Fund
  • Five Principles of patient centred care: Respect, choice and empowerment, patient involvement in health policy, access and support, information. (IAPO)
Based on these sites we constructed a word cloud using wordle.

definitions of patient centred care based on web pages from IAPO, Kings Fund, Planetree, Commonwealth Fund NSW Clinical Excellence Commission and ACSQHC

In the US the Affordable Care Act has Patient-Centered Outcomes Research Institute (PCORI) which was created by US Congress through the 2010 Patient Protection and Affordable Care Act as an independent, non-profit research organization to help patients and those who care for them make informed health decisions.  PCORI will commission research that is responsive to the values and interests of patients and will provide patients and their caregivers with reliable, evidence-based information for the health care choices they face.

One of the first things PCORI is doing is developing a definition of patient centred care so that there is shared understanding.  They are currently Seeking Public for Input on Definition of Patient-Centered Outcomes Research.  This consultation period ends on 2 September. Individuals and organisations are invited to provide feedback on five questions through PCORI's website,  they will refine their working definition based on the input they receive.

The working definition says "Patient-Centered Outcomes Research helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options." It answers four patient-focused questions:
  • "Given my personal characteristics, conditions and preferences, what should I expect will happen to me?"
  • "What are my options and what are the benefits and harms of those options?"
  • "What can I do to improve the outcomes that are most important to me?"
  • "How can the health care system improve my chances of achieving the outcomes I prefer?"
The need for a shared understanding is very strong and we can safely anticipate more converations between clinicians, policy makers and consumers around what we mean when we say patient centred care. 

Darlene Cox
Executive Director

Friday, July 22, 2011

Consumers Reforming Health

Earlier this week I was fortunate enough to attend the inaugural Consumers Reforming Health Conference hosted by the Health Issues Centre in Melbourne.

It was my first experience of such an event on such a scale - there were over 400 participants from a variety of health related fields, including consumers, health professionals and academics.

The sessions were jam-packed with information on a range of topics such as consumer engagement in mental health, the history and future of the consumer movement in Australia and the myriad benefits of patient-centred care for consumers, family/friends/carers and health service staff.

While the accomplished speakers presented a cross-section of current developments in the area of consumer engagement in health, it was easy to see the key themes underpinning each presentation.

One of the key themes I picked out and one which was expanded upon across the course of the conference concerns the future of consumer engagement in this country. The Australian consumer movement is strong, coherently structured and operates in the mainstream with regard to policy development. However, as Hans Lofgren of Deakin University argued, the increasing official recognition of the importance of consumer engagement may belie the realities of the movement's impact on policy-making. It really highlighted for me the fact that as consumers we must be continually pushing for recognition and engagement - we cannot afford to rest on our laurels, despite our achievements.

The importance of patient-centred care was also strongly asserted by speakers, demonstrating the benefits for patients and their loved ones, but also for staff. Susan Frampton, President of Planetree in the USA, presented patient-centred care in the form of a "business case", outlining the countless emotional, social, health and economic advantages to employing a patient-centred care model.

Overall, the conference emphasised the importance of viewing consumers as equal partners with clinicians in the provision of health care services. The "equal partner" rhetoric was utilised by Beth Wilson, the Victorian Health Services Commissioner, in her opening address and was echoed throughout the conference. Much was made of the unique knowledge and insight consumers can possess about their own health condition, and how they must be valued as an integral part of the care team.

The conference closed with remarks from a panel which comprised Tony McBride (the Australian Health Care Reform Alliance), Dr Jocelyn Cornwell (King's Fund UK), Andrew Hayne (COAG Reform Council), Stephen Murby (CHF), Phillip Bain (Northern Division of General Practice) and HCCA's own Russell McGowan. The panel reflected on the future of consumer involvement in health care policy and touched on the role of the internet and other information technology in further democratising the system and empowering consumers.

The Consumers Reforming Health Conference really enthused me and made me positive for the future. It was so encouraging to see so many consumers and health professionals enthusiastic about promoting consumer engagement within our health system.

Heather McGowan
Consumer Representatives Program

Tuesday, July 19, 2011

Reflections on Consumer Engagement in Health

I am attending the Consumers Reforming Heath Conference in Melbourne.  I commend the staff and the Board of the Health Issues Centre for their work in providing us with the opportunities to come together and reflect on some of the achievements of consumer participation in the local, national and international settings.

The last session of the day was a panel of people pondering the gains the consumer movement has made in the past decade.  The panel was chaired by Mary Draper, Chair of the Health Issues Centre.  The responses of the panel were very insightful, based on their experiences of health systems and relationships with other consumers.  There was a lovely mix of international (UK, US and Canada) perspectives as well as Chairs of national (CHF) and state based, peak consumer organisation (Qld, WA).  
I have done my best to reflect in this post what each of the speakers said but please leave a comment if you think it needs adjusting.

Jocelyn Cornwell spoke about the development of the National Service Frameworks as one of the strongest advances for consumers in the UK. The National Service frameworks and strategies set clear quality requirements for care. These are based on the best available evidence of what treatments and services work most effectively for consumers. These were influenced by patient organisations in particular those focussing on heart disease, stroke, mental health and cancer.

Jocelyn also sited the effective consumer involvement in research and in particular the work of Involve. Involve is a national advisory group which supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by the National Institute for Health Research.   Anne McKenzie (HCC) has had a long standing commitment to involving consumers in research and is very supportive of Australia moving in the direction of the UK in this way, reflecting that the UK is a decade ahead of Australia in the way in which they involve consumers in research.  This is certainly a challenge for the consumer movement in the coming decade.

Susan Frampton saw the increase in access to clinical information through the internet as a gain for consumers generally.  Access to better information has the potential to better inform consumers and assist us to make more informed decisions about our health care by Susan doesn't think we have yet realised the power this provides for us as health care consumers.  The US is further ahead if Australia in terms of the public reporting of clinical and patient satisfaction data but Australia, with the myhospitals website, has certainly started on this path.  In the coming decade we will see this information used by consumers to make decisions about where we receive health care and as a tool to leverage improvements in quality of care at hospitals   

Sue Robins told a very powerful story of visiting a specialist with her son and the respect, the attention and  listening the doctor gave to them  This specialist worked in a collaborative way and showed old fashioned kindness.  In this day of everyone being "crazy busy" and with the specialisation of disease and development of technology  it is less likely consumers and our families will experience this care.  Sue referred to the fee for service model in Canada and reflected on how that does not always enable time for conversations and shares the view that many of us in Australia hold that the fee for service model can work against quality care.  I am following with great interest the development of activity based funding and quietly wondering whether it will be the saviour that some have told me it will be.

Steven Murby thought that we had achieved the tick-a-box stage of consumer engagement and that we ask more, are told more but we are not in the feedback loop of systemic improvement.

Anne McKenzie reflected on the activitist beginnings of the consumer movement and thought we had two clear successes.  The first is the establishment of the health services commissioners who can investigate consumer complaints.  There is now the acknowledgement of the right consumers have to complain.  This is one of the rights that have been preserved in the national Charter of Health Care Rights.   My view is that one of the challenges of the coming decade is to embed that right (and the other six in the charter) into practice at the bedside and in the consulting rooms. The other gain that Anne shared was the establishment and funding of consumer organisations in most of the states and territories. Tasmania and Northern Territory to not yet have such organisations.  I share Anne's view that it is these organisations that will drive meaningful engagement in the next decade.

Mark Tucker Evans built on the points of the previous speakers regarding the growth and development of consumer organisations at the state and territory level, consumer access to better information and the embedding of the charter of health rights.  Mark also reflected on his disappointment (and he is not alone in this) of the watering down of the commitment to patients cntred care which came through so clearly in the National Health and Hosptial Reform Commission's final report.  This material is available online and I think it is important that we go back to it over the coming years along with the report of the Preventative Health Task Force.

So for the next ten years the panel pointed to the following:
  • let's embrace the digital revolution and look to see how it can build relationships between consumers, with our treating teams, to increase our understanding of our health (Jocelyn)
  • let's have a different conversation based on what do we want our health for? This will empower consumers to set the agenda and engage us in our own health (Susan)
  • it would be wonderful for doctors to engage in reflective practice (Sue)
  • we need to pay attention to the politicisation of our health system by stealth and look at how the cabinet is now making decisions about approvals for the medicines listed on the PBS (Steven)
  • let's move from rhetoric to action and make sure that the people on the floor know about it and embrace consumer participation.  Let's develop action plans that bring into practice the frameworks and overarching strategies. (Anne) 
  • let's have a cross sectoral approach and make sure that aged care, disability, community care are part of the health system as well as primary care and acute services. (Mark)
Thanks to the panel for such insights, it was a very valuable session.

Darlene Cox
Executive Director

Friday, July 8, 2011

HCCA Vacancy: Consumer Coordinator

HCCA is seeking a Consumer Coordinator with excellent communication and coordination skills to work with consumers and community organisations on improving access to public health services through the National Access Program.

HCCA is involved with health service planning and redesign of clinical services provided by the ACT Government Health Directorate. We do this by supporting consumer representatives on operational and decision making committees, holding consultations with consumers, and providing consumer input into policies, plans and decision making fora.
 If you are committed to improving health services and advocating for consumer interests we would like to hear from you.
 The hours and days are negotiable, up to 25hrs per week. Award level will depend on the skills and experience of the successful applicant. This is a 12 month contract with possibility of extension.  Other conditions of employment will be based on the Social, Community, Home Care and Disability Services Award.

HCCA promotes a healthy work-life balance and is committed to offering employees a supportive family friendly working environment.
 Applications, addressing the selection criteria, close on Friday 22 July 2011.

Contact the HCCA office for more information.

More information about the National Access Program is included on our blog