CDPC Baseline Evaluation Report

2015

Who we are

The vision of the CDPC is to improve the lives of people living with dementia and cognitive decline through the co-creation and dissemination of knowledge that changes policy, systems and practice.

The Cognitive Decline Partnership Centre (CDPC) brings together academics, clinicians, service providers and consumers to conduct research on supporting people to live with dementia and to translate these findings into practice. Our work is underpinned by a knowledge to action cycle: we believe that involving end users throughout the research process will help overcome barriers to applying evidence to practice.

The CDPC was awarded $25,282,492 over five years. The funding commenced in April 2013 and the first research projects began in early 2014. The CDPC is currently conducting 19 Activities, which are supported by seven enabling sub-units.

The CDPC is directed by Professor Susan Kurrle, who is responsible for providing overall leadership and management. Sue is supported by the CDPC administration team and the Executive Committee which is made

up academic and systems-based investigators and a representative from the Consumer Enabling Sub-Unit. The Governance Authority, which is comprised of representatives of the four Funding Partners – Alzheimer’s Australia, Brightwater Care Group, HammondCare, Helping Hand Aged Care - and the NHMRC, is responsible for setting the overall strategic priorities of the Centre as well as monitoring the Centre’s progress.

This is the baseline report from the 2015 CDPC evaluation. It reports on the 17 CDPC activities operating in 2014, their outputs, and network members’ perceptions of the Centre’s operation. It draws on document analysis, 40 qualitative interviews and 67 surveys with network members.

Expenditure 2014 ($)

Primary objective

Activity Name Expenditure 2014 ($)

Duration(years)

Implementation CHOPS (Act 2)Weavers (Act 4)Vitamin D (Act 12)

239,583125,595 33,977

223

Synthesis and Dissemination

Key worker role (Act 3)Advance care planning (Act 5)Living with dementia in the community (Act 8)Supporting res aged care staff (Act 10)National Dementia Guidelines (Act 13)Primary care consensus guide (Act 14)

110,072114,294 39,264

213,899144,948 48,169

231.5

232

Collaborative new research

Long term care configurations (Act 1)Financial institutional practices (Act 6)Regulation in aged care (Act 7)Quality use of medicines (Act 11)Healthy ageing in Aus GPs (Act 16)Younger onset dementia (Act 17)

271,753123,065 84,537194,638 0 25,010

313511.3

Capacity building Interprofessional education (Act 9)Modelling cost effectiveness (Act 15)Management of Change RoadshowHealth Economics Workshop

316,778 0 25,000 23,650

31.75NANA

Activities 2014

2,085,583.00

78,783.00

493,829

Research Activities

Enabling sub-units

Centre administration

Total:$2,658,196

Inputs and Activities

Outputs

116 outputs in 2014

39 academic publications77 non-traditional publications4.4 outputs/$100,000

6993 people were exposed to CDPC research, 95% of whom were industry-based.

Activities were tracking well in 2014. They achieved 85% of all milestones and had a considerable number of outputs given that most of the Activities were just getting started. Comparable data will be available in future years.

204 organisations were involved in CDPC work.

Partnerships

- 6 members had not worked with any other members prior to the CDPC- 98 members were linked - 699 individual links- Density was low (6.7%)- There were more ties within sectors rather than between sectors (e.g. academics had more ties to other academics than to consumers, industry or government members) (p < 0.05)

Pre-CDPC member connections

Location of active CDPC members

12%

3%

36%

11%

17%

1%

9%

11% ACT

International

NSW

QLD

SA

TAS

VIC

WA

Partnerships are an essential part of the CDPC. By involving partners in all stages of the research process, we can generate high quality evidence that is relevant and applicable to the ‘real world’.

CDPC has been successful in developing partnerships between sectors. The social network analysis conducted for the evaluation shows that there is a high number of new collaborative ties among the 104 active CDPC members. There has also been a measurable shift from within sector collaboration to across-sector collaboration since the CDPC began.

Current CDPC member connections

- All 104 members are linked- 2,360 individual links- Density is medium (22.7%)- Ties are equally spread across sectors (p < 0.05)- Average number of ties is 23

LegendGreen = consumersBlue = IndustryRed = AcademicsYellow = Government

Square = NSWUp triangle = VictoriaCircle = South AustraliaDown triangle = QueenslandCircle in a box = ACTDiamond = International

6 elements of effective partnerships

Commitment – to shared goals

Commitment to a shared goal forms the foun-dation of the partnership centre, and all CDPC members espoused a strong commitment to improving the lives of people living with dementia (see graph below).

1.00 2.00 3.00 4.00 5.00 6.00 7.00 8.00 9.00

Aim to achieve an additional term of funding

Result in tangible benefits for four industry partners

Produce outcomes that reflect value for the money

Focus on improving the knowledge and skills of the workforce

Actively engage with industry, academics, government andconsumers in all aspects

Develop improved information and evidence about cognitivedecline

Be a platform to develop innovative ideas

Achieve policy and systems change

Result in positive changes for people living with cognitive andrelated functional decline

Mean (1=not at all important, 9=most important)

Successfully doing research in partnership also requires members of the partnership to give up some power and control over the research process. This is most critical when it comes to developing research priorities and research questions: if this early stage is not done in partnership, then it is less likely the findings will be translated into practice.

Ranking of CDPC goals by network members

Research cultures – defining expectations and roles

CDPC research involves people from industry, academia, consumers and government, all of whom have different perspectives on what research questions should be prioritised and what constitutes good enough evidence to be implemented. Blending these research cultures requires that all partners engage in honest discussion, negotiation and flexibility regarding setting the priorities and the direction of research. It also requires that the CDPC has a clear process for how all partners are involved in the development of research priorities and research questions.

From day one, the research team have clearly had the intention of engaging and looking at the research question and the methodology based on input and advice and feedback from everyone involved… So that’s been, for me, the most positive experience of any of the activities. (Participant 28)

We have successfully created new connections between industry, consumers and academia. These six key elements will help us to embed partnership in everything we do.

Problem solving – through communication, compromise and support

Challenges are inevitable when doing research in partnership, and it is crucial that problems are resolved in a way that preserves relationships and does not impede Centre progress. Problems are successfully resolved when there is honest, respectful communication; willingness of all parties to compromise; and strong support from the Centre administration team.

Resourcing

The majority of people involved the CDPC have multiple personal and professional responsibilities, of which the CDPC is only one. DSBIs and Lead Investigators are particularly stretched for time, as their CDPC responsibilities were added on to their existing roles. Consumers who are involved in the CDPC are not paid for their time and expertise. While consumers are extremely generous with their time, is important that the network remember and respect that consumers are volunteers who are often involved in several projects outside of the CDPC as well.

The biggest issue [with DSBIs] was that they’re quite limited in the amount of time that they can contribute to the project… I was quite shocked at how many other projects the DSBIs were involved in and how, essentially, their involvement in the CDPC projects was just placed on top of their current roles within their organisation, which really did limit how much input they could have, regardless of how interested they were in the project. (Participant 16)

Communication – targeted, frequent, respectful

Communication is essential for working in partnership. Communication works well when it is frequent, targeted to the audience, and respectful. Face-to-face communication is particularly useful for improving relationships and reducing the potential for misunderstandings. Communication at the Activity level has improved considerably since the CDPC began, but more needs to be done to increase network members’ awareness of Centre Activities and to improve communication of the overall Centre goals.

Trust – through respect and generosity

Trust is a crucial element required to work together effectively. Most people had a high level of trust and respect for people in the same group (e.g. within Activity teams), however, there were lower levels of trust between industry, academics and consumers more broadly (only 57% agreed that there is trust between groups). Trusting relationships were built through showing gratitude and respect, which is demonstrated by small actions such as active listening, inclusive decision-making, and good teleconference etiquette.

Governance and administration

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Technology and Telehealth ESU (n=35)

Research Methodologies ESU (n=43)

Governance Authority (n=49)

Policy and Legislation ESU (n=46)

Scientific Subcommittee (n=49)

DSBI ESU (n=49)

Management of Change ESU (n=47)

Health Economics ESU (n=50)

Consumer ESU (n=54)

Executive Committee (n=52)

Director (n=62)

Administration Team (n-63)

Your Activity team (n=55)

Dissatisfied

Neutral

Satisfied

Satisfaction with CDPC units

The CDPC network has overcome initial challenges experienced during its establishment, including securing ethics approvals and establishing roles and responsibilities, to establish a structure that has successfully facilitated new connections between members. There were, however, varying levels of satisfaction of individual aspects of the CDPC structure (see graph below).

Ninety four per cent of network members are satisfied with the Centre Administration Team. The Administration team could do more to improve communication throughout the network, and to provide better feedback to Activity teams using quarterly monitoring data.

The governance of the Centre (Governance Authority (GA), Executive Committee and Director) is crucial for the Centre’s continuing success and operation. GA and Executive Committee members reported that their respective committees are operating well. However, interviews from members of CDPC governance highlighted a critical challenge facing the CDPC governance at this stage: that there is a lack of agreement about how remaining

funding should be allocated and prioritised. It is crucial to resolve this issue because continuing lack of clarity, and associated delays in allocating funding, has the potential to erode goodwill among network members and delay the achievement of outcomes.

CDPC Enabling Sub-Units, including the Designated Systems Based Investigators (DSBIs) and Consumer Enabling Sub-Unit, provide substantially different levels of support to Activity teams. One sub-unit, for example, provided only low levels of advice to three Activities, while other sub-units provide considerable advice and input to all 17 Activities.

DSBI involvement is appreciated and valued by research teams, but DSBI commitment differed by activity/organisational/personal interest. Network members were overwhelmingly positive about the contribution of consumers, who have worked hard to ensure that the consumer role is respected and integrated into all CDPC Activities. Ensuring that appropriate resources are available and clarifying the roles and responsibilities of enabling sub-units, are important to ensuring that industry and consumer voices are adequately represented in CPDC research.

The CDPC is working pretty well, but the evaluation shows that we can work even better if we make some small changes.

All CDPC members are committed to working in partnership to improve the lives of people with dementia. The entire network – including aca-demics, industry and consumers – can build rela-tionships, make decisions and resolve problems more satisfactorily if we communicate well.

• We can all work to improve how we communicate by speaking more frequently by telephone and face-to-face rather than by email, tailoring our message to the au-dience, and running inclusive, professional teleconferences.• If a problem arises regarding your work with the CDPC, let the Centre Admin team know. We are here to help things run smoothly.

Lead investigators are responsible for establish-ing a culture of working in partnership. The begin-ning stages of a research project are crucial for setting this culture. We can improve this by:

• Involving all partners in the development of research questions.• Clarifying roles, responsibilities and expectations of all team members from the beginning. • Establishing consistent, targeted commu-nication processes even before your activity

has officially started. Develop good telecon-ference etiquette is imperative.• Having an introductory face-to-face meet-ing to get your activity off on the right foot.

The CDPC administration team is responsible for making sure the CDPC runs smoothly. We can improve how we are working by:

• Improving how we target our messages• Provide more regular updates about how our Activities are tracking.• Provide clearer information about what the CDPC has achieved.

The governance of the CDPC – including the Director, Governance Authority, and Executive Committee - are responsible for providing the leadership required for the CDPC to succeed. CDPC governance can be improved by:

• Clarifying the process by which the re-maining funding will be allocated, keeping in mind that operating in partnership is a core value of the Centre• Clarifying expectations for enabling sub-units• Coming to a consensus about what the CDPC should achieve by the end of the funding period.

Looking ahead

Authorship and Acknowledgements

This report was authored by Shannon McDermott, Janet Long and Katrina Radford, with support from Anneke Fitzgerald, Amy Boland, and Heather Middleton. The authors would like to thank all of the members of the CDPC network who generously gave their time to participate in the evaluation and to provide feedback on evaluation findings. We would also like to thank our other co-investigators, Sue Kurrle, Ian Cameron, and Anne Cumming.