International and Patient Centred Care Conference #5

From Partners in Care to Partners in Research –Sue Sheridan, Director of Patient Engagement at PCORI

I have been following the development of PCORI from afar. PCORI is the Patient-Centered Outcomes Research Institute.

What intrigued me was that here was  a body focused on supporting consumer priorities for research and had a core criteria of involving consumers as partners in the development of the research questions, on the research team, analysing results and disseminating the findings. This is really good. At HCCA we are involved in some research but see that this is a real area of need.

So, I was really pleased to hear from Sue Sheridan, Director of Patient Engagement at PCORI about their processes, some examples of research projects and what they have learned along the way.

Participation in research is different to participation in care. We certainly find this and it was really good to hear Sue Sheridan say this right at the start.

What follows are my notes from her talk. 

So what is patient engagement in research? Created by the Affordable Care act and will only fund research where there are patient partners on the teams, design the questions and with outcomes relevant to patients. Patients don’t read the Lancet and JAMA show do we share evidence?

COPD patient didn’t follow the instruction on O2 use and so was re-hospitalised as he didn’t understand the importance of using it, how to order it.  So the research is looking at devloping consumer materials and then measureing if peer intervention improve outcomes.

End of life care and support, John Hopkins. Mother developed research question, she lost her child and her mother at the same time and realised that there were discussions that did not happen yet they were critical. PCORI funded this project.

How can you improve outcomes by tapping into the experience of people living with these conditions? They are recruiting via facebook and social media.

Patient and family centred research – policy – evidence based patient and family centred care – improved outcomes – form a pyramid with the research at the bottom and improved outcomes at the top.

Research has not answered many questions that patient face. People want to know which treatment is right for them. Patients need information they can understand and use. PCORI focusses on comparing interventions (eg, visual assessment with Bilirubin test for jaundice)

Sue Sheridan shared a story yesterday about her experience with her son. Today she spoke about her husband falling through the cracks in his cancer journey. I appreciate her generosity in sharing these stories. When her husband was presented with treatment options for cancer the neurologist  gave them two options: Gamma knife or cyber knife –but he could not say which was more effective or which option was best? They do not know what difference. One was available locally, the other involved travel to California. There was not evidence at the time to indicate which technique had would lead to a better outcome for her husband. So, as she said, they opted for "the cyberknife beacuse the name was cooler". I just googled this and the first thing that came up was gammar knife of cyber knike - what's the difference? 

Patient engagement in the design and conduct of research offers a greater likelihood of influencing research to be patient centred, useful and relevant. It establishes trust and a sense of legitimacy in its findings. It will lead to successful use and uptake of research results by the patient community. 

We have lived experience and we know what is important to us. Our data is our currency. Consumer groups are coming together and agreeing to share their data with researcher to make a difference. And patients have connection to other people and online communities. Patients can open the world up to researchers not only for recruitment but also dissemination of results.

Patients contribute lived experience of condition or disease and we can help to shape questions that are important to patients and outcomes that are important to us, such as quality of life. Patients focus on patient centeredness, ethics, safety and urgency.

PCORI have five criteria, three relate to robust science method but the other two relate to patient centeredness and patient and stakeholder engagement. PCORI has engagement officers to ensure that the projects are achieving the milestones for patient centred care and stakeholder engagement. Authentic and meaningful engagement and doing as much as they can to lead to patient centred research.

The Rubric: They have delivered a rubric that spells out what patient engagement looks like. It also identified principles that apply to each aspect: planning the study, conducting te study, disseminating study results and PCOR engagement principles. For example in conducting the study: How best to disseminate information about mental health in the Arkansas delta. They changed the way mental health was spoken about as this is perceived as something for crazy people. So they changed it to emotional wellness.

She also spoke about a project in New Mexico – where there are high rates of substance abuse and PTSD. Peers are delivering a program called Seeking Safety to the mental health community. And area under-served. One part of the community is seeing a psychiatrist and others are seeing a peer. So is it effective? They are comparing the delivery of the same tool.

Co-learning Kelly Young Patient partner with Rheumatoid Arthritis. Patient are often experts in their diseases but we are experts in our experience and this is invaluable to the project. Find a research that wants your input and your presence. You will both learn each other’s language. there is a blog post on the PCORI blog about this also. Well worth reading.

One of the benefits of PCORI is that they are challenging deeply held beliefs about expertise. There are really three critical roles that need to be recognised: Researcher, Patients and Clinicians: As the rubric is developed there will be more examples of partnering with patients and also clinicians, as their voice is needed as well.

They are coming out with a statement on fairly reimbursing patient partners. This was a message from consumers to flip the funding and not just provide funding to universities and medical centres.

Pipelines to proposals PCORI has created a three tiered approach. Tier 1 pipeline. Pipelines to proposals – fund a patient $15,000 to find a researcher. What are the outcomes important to patients in rural Wyoming with Parkinson’s disease? Young woman in Seattle looking at preterm births. Making sure that HIV patients make their appointments. And there are many projects online that you can read. The application is 8 pages and uses lay language. It is a nine month project. It has potential to move into Tier 2 and then Tier 3.

Great work and exciting to watch.

Darlene Cox

@darlenecox

What is the National Access Program?

The ACT Government is currently involved in large scale clinical redesign and health service planning to underpin an ambitious capital works program. This is a significant body of work for and has great potential to bring about structural changes to clinical practice, and to improve efficiencies as well as health outcomes for consumers. HCCA is committed to working with the Government to provide independent, effective consumer input in the developing solutions to intractable.

In April 2010 the Council of Australian Governments agreed to sign the National Health and Hospitals Network Agreement. The reforms outlined in the Agreement are designed to drive major improvements in service delivery and better health for patients, whilst equipping the health and hospital system to serve the Australian community into the future.

The agreed reform program will change health funding. This funding will be linked to health performance targets, known as the National Access Targets. 

They are:

• the 4 hour access target - 95% of all clinically appropriate presentations to emergency departments will have been assessed, treated and either admitted, transferred or discharged within 4 hours of arriving at the emergency department.

• the elective surgery access target – 95% of all people accessing elective surgery should be admitted for surgery within clinically recommended times.

To meet these targets, ACT Health has established the National Access Program to develop and implement the required structures and processes within hospitals in the ACT. The goals of this program of work are to support the delivery of safe and effective care for patients, regardless of the hour of the day, aiming to have the right person in the right place at the right time to meet these targets.

HCCA has received funding for a Consumer Coordiator to work with policy makers and clinicians to ensure consumer perspectives are included in this work.

National Health Reform - Consumer Information Session in Canberra

On 29 April 2010 the Hon Mark Butler MP (Parliamentary Secretary for Health) spoke with members of CHF and HCCA at Scarborough House, Woden.  

Photo: Russell McGowan, Mark Butler, Darlene Cox and Carol Bennett at the Consumer Information Session

Mr Butler spoke about the Government's reform agenda announced in the National Health and Hospitals Network for Australia's Future.  He also spoke about the key issues that emerged from the consideration of the context for health reform by the National Health and Hospital Reform Commission (NHHRC) consideration of the health system.  His presentation included a summary of the recommendations arising from the Preventative Health Taskforce, Primary Care Task Force as well as the NHHRC.

The challenges in the Australian health system include:

• fragmentation of care
• gaps and poor coordination of services
• pressure on public hospitals and health professionals
• unsustainable funding model
• too much waste and inefficiency, and
• not enough local clinical engagement

Participants were fortunate in that the timing allowed us to ask Mr Butler about the agreement that had been reached at the Council of Australian Governments (COAG) on 19-20 April 2010. 

The COAG communique is worthwhile reading.  The Communique claims that the reforms will deliver better health and hospitals by:

• helping patients receive more seamless care across sectors of the health system;
• improving the quality of care patients receive through high-performance standards and improved engagement of local clinicians; and
• providing a secure funding base for health and hospitals into the future.

The rhetoric is good and we look forward to further consumer involvement in fleshing out the detail.

One area of interest is the 4 hour targets for the emergency departments.  This target is for consumers to be triaged, admitted, or referred and discharge within 4 hours.  It is in the process of being rolled out in WA and South Australia and will work from triage category 1 - 5 over a progressive period.  This is a signficant improvement.  Mr Butler cited figures that more than 600 000 people wait more than 8 hours at ED each year.  He also pointed to the ACT figures that show taht  only 58% people are seen within clincially recommended time for their triage category.  He compared this with NSW where 78% of people are seen in within the clinically recommended time.

Consumers need to be a little cautious about embracing such targets as we need meaningful performance indicators.  we need to push for indicators for improvement which involve reform to clinical practices to improve outcomes for consumers.  The UK introduced 4 hour targets and the BBC reported that there is a practice of 'fiddling' ED waiting time targets.

There was around 40 minutes for questions from the floor.  Below are a few of the questions and the answers Mr Butler gave:

Q: People with palliative care needs have to go to hospital to get the care they need in terms of pain and sympton relief?  do these announcements deliver more sub-acute care for people needing palliative care?
A: The Sub-acute care funding does not relate to palliative care.
Note: this means that consumers need to continue to advocate for community based palliative care and access to sub-acute care for people who need palliative care.
Q: How will this plan improve health outcomes for women? Is there any dedicated funding for women's health?
A: Women's health is not specifically dealt with in this agreement
Q: There are activity based funding payments on basis of outputs delivered by providers but what about incentives to reward prevention?
A: There will be incentives to jurisdictions to improve prevention
Q: there is lots of talk about consumer centred care but it seems once again we are talking about health economics and health financing.  How does the government plan to engage with consumers to make sure there is nothing about us without us?
A: These reforms will bring the consumer to the centre of each sector and level of care.  this will enable consumers to be at the centre of care as individuals as as communities.  the community based governance will enable community input into how services will be delivered.  The Primary Health Care Organisations will provide more 'patient centred care' (Mr Butler's words) with case management by multidisciplinary team rather than consumers accessing the health silos.
Q: Is there an architecture for governance that enables consumers and the community to have a discussion about how it will hang together in respect of the electronic agenda that has to support all of this?
A:  With respect to e-health, the Prime Minister will make comments about this in the future and it is reflected in the communique to COAG
Note: the Communique says "COAG noted the importance of continuing to work towards a National Individual Electronic Health Record system and agreed to prioritise discussions over the coming months to move towards the implementation phase".

Consumer Information Session with Parliamentary Secretary for Health, 29 April 2010

The Consumers Health Forum of Australia (CHF) and Health Care Consumers' Association (HCCA) are co-hosting an information session to discuss the Federal Government’s proposed National Health and Hospitals Network with the Hon Mark Butler MP, Parliamentary Secretary for Health.

The consultation forum is planned for Thursday 29 April 2010 (09:00am to 10:30am) in Canberra. The venue is the Department of Health and Ageing Theatrette in Scarborough House, Woden.

We hope that many of our members will be able to attend this important event which will provide an avenue for consumer information and discussion on the hospitals reform debate.

Please register your interest to attend with Lindee Russell, CHF Project Officer by phoning (02) 6273 5444.

Please note that unfortunately funds to support attendance are not available. If you have any special needs please ensure you let us know.

AHCRA Summit March 2009: response to the NHHRC Interim Report

Last week I attended the Australian Health Care Reform Alliance (AHCRA) Summit in Melbourne.

The purpose of the Summit was to develop the AHCRA response to the Interim Report of the National Health and Hospital Reform Commission. The Summit was very well supported by the membership of the Alliance with clinicians, academics, lobby groups and consumers present. There were a range of presentations and then discussion groups based on a range of questions central to the presentations (called World Cafe conversational process).

On Day 1 Dr Christine Bennett (Chair, NHHRC) provided an overview of the Interim Report and we had the opportunity to ask questions. Dr Joanne Holt, Secretariat to the Commission participated for the two days of the Summit and was very interested to hear a range of views.

Participants were very supportive of proposals for one national health system (rather than the eight systems funded by nine governments we currently have) and the much stronger focus on primary health care.

Equity was a theme that resonated strongly through all discussions and presentations at the summit. This is hardly surprising given that AHCRA holds dear the notion of equity and has been a strong advocate that any reform must ensure equity. This principle was expressed strongly regarding the equity (and efficiency) of the private health insurance rebate.

The Summit recognised that the effect of the social determinants of health on health outcomes was crucial and should be a priority in public policy planning and would like to see the NHHRC reflect this more strongly. Professor Leonie Segal, a health economist form university of South Australia, spoke about the equity and efficiency of our health system. Professor Fran Baum, Member of the World Health Organisation Commission on the Social Determinants of Health spoke about linking health policy to the social determinants of health and health equity. She shared a quote from Dr Margaret Chan, Director General of the World Health Organisation on the need to embed the social determinants of health in all government policy:

“The Commission's main finding is straightforward. The social conditions in which people are born, live, and work are the single most important determinant of good health or ill health, of a long and productive life, or a short and miserable one. … This ends the debate decisively. Health care is an important determinant of health. Lifestyles are important determinants of health. … But, let me emphasize, it is factors in the social environment that determine access to health services and influence lifestyle choices in the first place”.

This quote resonated strongly with participants and framed much of the discussion at the Summit.

Meaningful community engagement was another theme that emerged. We were privileged that Dr Mick Adams (Chair, NACCHO) and Paula Arnol (Danila Dilba Health Service) were able to participate and share their experience of aboriginal community controlled health services. Rom Mokak (CEO, Australian Indigenous Doctors' Association). They spoke about the need for capacity development to ensure communities are able to engagement meaningfully in identifying health needs, planning, monitoring and evaluating policies and services, developing and implementing governance structures and sustaining this level of engagement. Paula Arnold spoke about the Katherine West Health Board as an example of successful community engagement.

Comprehensive Primary Care is promoted in the Interim Report as the necessary reform in the Australian health system. There was considerable discussion about what the essential elements of comprehensive primary care. The NHRRC defines primary care quite simplistically as "the first level of care". Participants drew on their own experiences as consumers, clinicians, researchers and policy makers to flesh this out. This included universal accessible health care, community based services and the importance of continuity of care. Professor Claire Jackson (Chair of the Primary Health Care Strategy Expert Reference Group) and Professor Michael Kidd (Dean, Flinders Medical School) in their presentation on primary care drew our attention to the definition contained in the National Aboriginal Health Strategy (1989) as they considered this to include the essential elements of comprehensive primary care.

“Essential health care based on practical, scientifically sound, socially and culturally acceptable methods and technology made universally accessible to individuals and families in the communities in which they live through their full participation at every stage of development in the spirit of self-reliance and self-determination.”

Participants argued for the inclusion of oral health into primary care rather than continue the strangely entrenched separation of oral health (including dental) in the proposed establishment of Denticare. We argued for step-up Step-down facilities to be included in comprehensive primary care rather than continuing to see this as transition care and by default being attached to the acute setting.

Super clinics and comprehensive primary health care

The government is committed to 31 super clinics. The strong message was that communities need to be involved in establishing these clinics to ensure that the comprehensive primary care services will meet the needs of the community. Concerns were expressed also around safeguarding these centres from the further corporatisation of primary care. The community must be enabled to play a critical role in the selection of providers through the tender process and then the ongoing monitoring the performance of these super clinics.

Regional Health Authorities

Participants agreed that the health system should be driven by population /consumer/community needs, not by those of providers. One way this can be strengthened is acceptance of the NHHRC Option B, to establish regional health authorities. This option had strongest support from participants. The regional health authorities would have funding allocated on basis of demonstrated need of the community. A population size of approx. 100,000 to 500,000 would allow local responsiveness, but have a critical population mass to support primary and secondary services.

Funding models

There was considerable agreement bet ween participants that the most equitable and efficient way to fund health care is through a universal health system funded through taxation. Participants expressed the view that the system needs to move away from fee-for service payments and consumer payments, towards a blended system with significant payments for the total health care needs of a population, based on voluntary enrolment.

The presentations are available online at the AHCRA website.

Comment on Liberal Party Health Policy

eYesterday the Liberal Party launched its health policy, promising an extra 80 new hospital beds, 37 new emergency beds and a 'super theatre' at Calvary Hospital for elective surgery. We are yet to read the detail and have received advice from Mr Seselja's office that the health policy will be available on their website by 4pm today.

At this stage we can say that any additional spending on health care is welcomed however we would prefer the expenditure was planned and working towards introducing new models of health care rather than committing to more of the same.

We do not consider that the invective of 'war on waiting lists' is beneficial. We look forward to reviewing the policy to ensure that there is a level of details that moves beyond this.

We ask the Liberal Party to commit to working collaboratively with consumers to achieve a rational and sustainable solution to the growing demand for health services.

As you know, Health Care Consumers' Association has been advocating for more options to ensure that our community received appropriate care in a variety of settings. Hospitals are not always the most appropriate setting for care and we need to provide options for consumers to access primary health care and other community based services.

We support the refurbishment and construction of community health centres. We are also supportive of redefining roles within the health workforce to help meet the increasing demand for services. We are also keen to see progress on the development of systems to support electronic health information, including electronic discharge summaries and electronic prescribing.

Once we have seen the details of the policy we will be able to comment further.

Darlene

Universal Heath Care

Universal health care is health care coverage which is extended to all citizens.

The Medicare website proudly announces:

Welcome to Medicare - Australia’s universal health care system. Medicare ensures that all Australians have access to free or low-cost medical, optometrical and hospital care while being free to choose private health services and in special circumstances allied health services.

Universal Health care is back in the media. The National Health and Hospitals Reform Commission (NHHRC) is talking about universal health care. The Prime Minister has been quoted as saying that Australia's 40-year-old universal healthcare system is failing to deal with new developments, most notably in mental health and dental care. There is some suggestion that the NHHRC is considering enhancing the Australian Health Care Agreements to reflect the whole health needs of the person, including mental and dental health. There is also significant international discussion on universal health care.

There is an issue of how we can fund this. As consumers we understand that the public purse is limited and Medicare can only provide so much, and we have moved beyond a publicly funded universal health coverage. Instead we have a health system that is delivered through a mix of public and private funding arrangements, including out of pocket payments by individual consumers. The services are provides by the Commonwealth, states and territories, non government organisations and private providers.

The Commonwealth Fund has an article on how to achieve universal health coverage while lowering health spending. They present an overview of a new health reform framework, built on the current U.S. mixed private–public system that "provides a pathway to universal coverage with a minimal increase in total national spending and relatively modest net federal budget costs." There is a range of views posted in the comments to this article that demonstrate the difficulties in meeting the needs of all.

The Commonwealth Fund also draws attention to changes in the Netherlands, with the launch of a sweeping national health care initiative in 2006 to provide universal health care coverage for its population. The Health Insurance Act 2006 requires all people who legally live or work in the Netherlands to buy health insurance from a private insurance company. Consumer can choose from 14 insurers.

The Commonwealth Fund says that this model “succeeds in providing quality insurance coverage, at affordable cost, to nearly all its citizens--while continuing to have private insurers play a leading role."

We are not alone in trying to provide health services for all citizens and find the right combination of public, private and NGO providers.

Should we increase spending on preventative medicine?

On 3 April Yesterday Life Matters interviewed Jeremy Sammut from the Centre For Independent Studies . He's been studying reports of the outcomes of public health campaigns and has concluded that there's a big difference between knowing what to do and doing it.

The CIS has written an article on six social policy myths. One of the myths they challenge is that higher spending on preventive medicine will reduce health costs in the future.
They argue that:

"prevention is better than the cure, but only when it works".

What do you think?