NHMRC targets dementia & cognitive decline

Above: International health policy and services researcher, Professor Jonathan Lomas

By Keryn Curtis

The National Health and Medical Research Council (NHMRC) has awarded up to $25 million to a new form of research partnership to tackle the issues around ‘dealing with cognitive and related functional decline in the elderly.’

In an Australian first, the research agenda will be established and led by a collaboration of three aged care providers with Alzheimer’s Australia, working with a multidisciplinary team of researchers, policy makers and people working in the sector, to ensure the research priorities are established from the perspective of the system, the end practitioners and consumers.

Touted in the media release as Australia’s first ‘Partnership Centre for better dementia outcomes’, the Centre will have funding of up to $5 million per year over the next five years; up to 2.5 million of which is being provided by the NHMRC.  The remaining funding – both cash and in-kind contributions – will come from the four partner organisations: Alzheimer’s Australia; Brightwater Care Group in Western Australia; HammondCare Group in New South Wales; and Helping Hand Aged Care in South Australia.

This Partnership Centre is the first of six centres expected to be announced in the first half of 2012, each targeting different key health priorities.

A new approach
The architect of this new research direction for the NHMRC is eminent international health policy and services researcher, Professor Jonathan Lomas*.  Lomas’ main interest, and the area in which he has an international reputation, is the role and impact of research evidence in health services and systems decision-making.  He was employed by the NHMRC in the position of ‘Knowledge Broker’, to develop the Partnership Centre program and oversee their establishment.

Professor Lomas says what makes this initiative different to traditional research is that the research priorities will be established from the perspective of the people working and practicing in the sector itself.  Likewise, the research work itself will be conducted jointly involving both traditional academics and people working in the field and dealing with the real issues day to day.

“The big difference here,” says Professor Lomas, “is that, as opposed to the usual model where researchers develop an idea and test it and try to sell it to the people in the system, this is an approach where you sit down together – and where the people who work in the field get to say, these are the problems and this is what we want to see done. 

“It’s a partnership between the people who are doing [the research] and the people who use it.  So it mandates the research to be packaged in a way that it is relevant.”

Professor Lomas said, while the approach was new in Australia, the partnerships model had already been successful in countries including Canada, the UK and the Netherlands and was also being adopted in the United States. 

“The first over the barricade gets the spear in the stomach! So there are some lessons that have been learned and that will benefit the experience in Australia.  But it’s still a very new model,” he said.

Early days
While the announcement was made by Minister for Health, Tanya Plibersek and Minister for Mental Health, Ageing and Social Inclusion, Mark Butler, on Christmas Eve last year, all the details of the project are yet to be finalised.  The partner organisations will have their first formal meeting together, and with Professor Lomas and others, at the end of the month.  

Research Manager from Alzheimer’s Australia, Dr Chris Hatherly, said the meeting would establish the details around governance and agree the way the partnerships will function and priorities for the key work areas.

“The way these centres are set up is quite complicated. The Centre is overseen by a governance board involving representation from the NHMRC and each of the four funding partners. 

“The governance board is setting the scope for the work. What they have done now is call for expressions of interest from research teams, which are due in mid February.  That process doesn’t look at the work content – just the experience and qualifications,” said Dr Hatherly.

“We are looking at 12 lead investigators to manage the whole $25 million worth of research over the five years.  The teams will be a hybrid of academic researchers and system-based people working within the sector.  As funding partners we have the right to nominate people as part of that team,” he said.

Dr Hatherly said the research team would be appointed quickly – by late February or early March – and a five-year work plan would be decided by the middle of the year.

“We will be pushing hard for a high level of consumer involvement.  The National Quality Dementia Care initiative has consumers making recommendations and we want to ensure a similar high level of consumer involvement in this process.”

Dr Penny Flett, CEO of Brightwater Care in Western Australia, said the opportunity for Brightwater to be part of the collaboration was ‘irresistible’.

“To play a part in something that could make such a huge difference for years to come is irresistible. It’s a once in a generation opportunity to do something that is immensely valuable and in an area where everyone is affected in some way.

Dr Flett said that, while she had no clearly formed ideas ahead of the January 30 meeting, one area she would like to see addressed is that of family carers.

“Family carers are people who live with dementia as well and the impact on them is enormous.  So I think it is really important to include all of their needs to too.” 

Bigger than dementia
Dr Flett also stressed that the partnership was looking at all forms of cognitive and related decline in the elderly, not just dementia.

“There are a lot of neurological problems that often go unnoticed and fall between the cracks. They’re square pegs – they don’t fit health, they don’t fit aged care, they don’t fit disability. Parkinson’s disease; motor neurone disease; Huntington’s disease; elderly alcoholics; even MS (multiple sclerosis) and other things like people with brain tumours or who have had brain infections. 

“Often they have strong advocates but they are still minority groups. Dementia is going to demand and deserve the lion’s share of attention but there are a lot of others that can’t be ignored, at least at the beginning.  Nothing should be excluded before we’ve had a good look at everything,” Dr Flett said.

CEO of HammondCare, Dr Stephen Judd agrees that the scope of the Centre is bigger than dementia, emphasising the role of the Partnership Centre in influencing and developing policy and regulation to drive practical change.

“This is also about identifying and addressing the structural impediments to current efforts with knowledge translation. A lot of funding is allocated to increasing knowledge but that doesn’t necessarily change practice,” said Dr Judd.

“For example, if you are talking about design of the environment and that sort of thing – what is good design for people with limited cognition – then you will find there is a fair bit of knowledge and evidence, both nationally and internationally.

“You can go to any bunch of experts here, in the UK, in the US, Canada etc and you will pretty much get the same answer.  So why don’t we see that knowledge reflected in design in residential care?  Why doesn’t the sector get that message?”

Dr Judd said the Partnership Centres were an opportunity to look at the relationship between evidence and policy and regulation. 

“This is an opportunity to ask, what are the impediments to seeing that the knowledge we have is expressed in practice? If you want these behaviours in practice, what do you have to do to enable that?  And what are the financial and policy drivers that can encourage and promote these better outcomes for Australians with limited or declining cognition?”

It’s a view shared by Ian Hardy, CEO of the other aged care provider partner, Helping Hand in South Australia. 

“I’d like to make two key points. One is to acknowledge that a key domain for the Partnership Centre is to synthesise research and bring it together.  There is a lot of good research and fragmentary knowledge around but I’m not sure it is captured and brought together really well,” said Mr Hardy. 

“But my real interest is in this notion of translating that learning into policy. If you take the longer view, this is a five year project which has the option of being renewed for a further five years. The time is right because, with the recommendations of the Productivity Commission coming into play, we are in an evolutionary policy situation for the next ten years. The timing is just brilliant,” he said.

About the Partnership Centres
The Partnership Centres are the second part of the NHMRC Partnerships for Better Health initiative, which aims to improve the availability and quality of research evidence to the decision makers who design policy; and to inform the policy process by supporting more effective connections between decision makers and researchers.

The NHMRC Partnerships for Better Health initiative consists of two types of award: NHMRC Partnerships for Better Health – Projects; and NHMRC Partnerships for Better Health – Centres.

The Partnership Centres will draw together researchers, policy makers and healthcare workers across multiple professions and disciplines such as health services and public health policy research, sociology, economics, psychology and clinical practice, to collaborate on research that aims to inform and improve policy, systems and practice around the topic.  

Across Australia, six partnership centres will be funded to tackle key health priorities.

The NHMRC has launched a call for a cross-jurisdictional investigator team to undertake the work plan of the first Partnership Centre.  The team will consist of both researchers and those working in the health system.   The core focus of the team will be on investigating supportive care in the home, the community and long-term care institutions. The investigator team for the first centre will be announced in the first half of 2012. 

For information about becoming an investigator, click here.

* Professor Jonathan Lomas 
Professor Jonathan Lomas is former professor of health policy analysis at McMaster University, where he co-founded the Centre for Health Economics and Policy Analysis (an applied research group with a strong emphasis on research dissemination and uptake). Prof Lomas became the inaugural Chief Executive Officer of the Canadian Health Services Research Foundation, a nationally endowed organisation founded in 1997 to improve the relevance and use of health services research in health system decision-making in Canada. He has consulted to the WHO, the World Bank and governments around the world. He was awarded the Office of the Order of Canada in December 2009 for his role in advancing research in Canada’s health sector

In making the award, the Canadian Governor General said Jonathan Lomas was “one of a handful of individuals internationally who has put health research knowledge transfer/translation on the radar for both research and policy/management communities.”

Professor Lomas was a guest lecturer at the Australian National University ANU in March 2011, conducting two masterclasses on the topic of ‘Diffusion, spread & sustainability of proven innovations in health care’.  Podcasts of both part one and part two can be downloaded free from the ANU news website, here and here.