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10C: Co-Design and Shared Decision Making

Tracks
Track 3
Wednesday, November 13, 2019
9:00 AM - 10:30 AM
Room 101 - 102

Details

Chaired by Dr Anthony Brown, Executive Director, Health Consumers NSW


Speaker

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Dr Cathy O'Callaghan
Research Fellow
University of New South Wales

15 Using a participatory approach to assess the effectiveness of the Get Healthy Service among Chinese communities in Sydney, Australia

Abstract

Introduction
Using a participatory approach to design and evaluate community health programs increases data validity and reliability, and the continued effectiveness of programs. The NSW Get Healthy Service (GHS) program has successfully improved the health and prevented the incidence of chronic disease in the Australian population but has been less successful in culturally and linguistically diverse communities.
Policy context and objective
To address this inequity, a bilingual version of the GHS was piloted in Chinese (Mandarin and Cantonese speaking) communities and assessed for its effectiveness. This population is a growing group within which there is increased risk of Type 2 Diabetes and gestational diabetes.
Targeted population
The evaluation of the bilingual service consisted of findings from 13 stakeholder community interviews, two in language focus groups with Chinese GHS graduates and two bilingual coach reports. This complemented the quantitative research regarding program participants and physical benefits.
Highlights
The GHS proved beneficial to Chinese communities, although participants and community stakeholders had different perceptions about its feasibility, acceptability and sustainability. Stakeholders had concerns about the relevance of the program to participants given the amount of health information circulated in Chinese communities. In contrast, focus group participants were positively surprised about the type and depth of the information provided about nutrition, exercise and maintaining healthy lifestyles. Stakeholders also had concerns about the commitment and health goal setting ability of participants. However, graduates identified that they were able to meet their health goals and were committed to the GHS over its duration.
Overall, the impact of the Chinese GHS was positive. Program participants reported that the service assisted in promoting healthy eating, physical activity, healthy weight and the prevention and effective management of chronic conditions. The bilingual program was perceived to be culturally and linguistically appropriate and enabled better health outcomes than receiving the mainstream service. Participants with low English proficiency were reluctant to use an interpreter so stakeholders were hesitant to recommend the program unless fully bilingual.
Comments on transferability
Using a participatory practical approach enabled the success and effective promotion of the service. The project team included members representing the funding body NSW Office of Preventive Health (OPH), Local Health District management and the communities who were involved as partners in the planning, implementation and evaluation stages, to achieve shared goals. Multiple views were sought in this evaluation including those of community stakeholders, bilingual coaches and program graduates.
Conclusions
Equitable access to health promotion campaigns and preventative health would be compromised if stakeholders could not effectively promote the service in the community and if resource materials were not culturally appropriate for the targeted population. Evaluation methods which seek the views of different stakeholders and participants are important to the policy cycle and to decision makers to ensure cost efficiency, program success and better health outcomes. This pragmatic participatory approach led to refinement of the Chinese GHS including addressing the concerns of stakeholders by emphasising that bilingual coaches are available and highlighting the success and uniqueness of the program to the community.

Biography

Dr Cathy O’Callaghan is Research Fellow (Integrated Care) at the Centre for Primary Health Care and Equity (CPHCE) in University of New South Wales. Cathy has 20 years of experience in multicultural health research, evaluation, workforce development, and management. She previously worked in the role of Learning and Workforce Development Program Manager at Multicultural Health Service in the Directorate of Primary, Integrated and Community Health, South Eastern Sydney Local Health District. Cathy has been a Conjoint Senior Lecturer at CPHCE since 2017. She completed her PhD at Western Sydney University on the recognition of cultural diversity in children’s hospitals through conducting qualitative health research with managers, staff and families. She has a keen interest in matters related to health equity, community development and qualitative research methods.
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M Lucille Chalmers
General Manager Commissioned Programs
Brisbane South PHN

147 Delivering on the promise of co-design – staying true to the consumer voice in delivering value-based health care.

Abstract

Consumers, stakeholders and a significant body of evidence are clear - doing more of the same will not get us to where we want to go to improve the outcomes of people with mental health, suicide or alcohol and other drug concerns. Transformational change will only be achieved when the people receiving care and their close supporters are equal partners in co-production of health services, taking an active role in planning, design, delivery and evaluation. However, the vision created from a co-design process can so often be lost when the voices of those who use the system are not sufficiently balanced with the needs of the system and health professionals.
In 2018 Brisbane South PHN embarked on an in-depth co-design journey to develop a vision for an integrated person-centred mental health, suicide prevention and alcohol and other drugs service model. Brisbane South PHN worked alongside people with lived experience, carers and close supporters, people from priority groups including young people, LGBTIQ, culturally and linguistically diverse, and Aboriginal and Torres Strait Islander peoples, service providers, General Practitioners (GPs) and practice nurses, and government organisations. The co-designers took part in discovery workshops, generating opportunities and ideas, prototyping, and giving and gathering feedback through testing and learning loops over several months.
The co-design process created a new service model, one that is based on a core set of principles to guide the mindsets, behaviours and attitudes of service providers. Support for consumers to connect and navigate the system is now available, and improved engagement and support for carers will be integrated into services. A clear commitment to building the lived experience workforce is now required of all service providers.

The challenge for the PHN was to translate this vision and service design into a procurement and service implementation process that stayed true to the original intent of the model, and to establish the foundations of a co-production approach that enables lasting and meaningful change to the mental health system in our region.
This paper will present the multi-dimensional strategy being undertaken to embed a co-production mindset into commissioning. Key learnings from the process to date will be shared, including innovative processes for involving people with lived experience in co-design, procurement, implementation and evaluation. The use of value-based contracting will be discussed and the importance of an ongoing change management plan to underpin the implementation will be highlighted. The application of these experiences across different population groups and communities will be explored.

Biography

Lucille is the General Manager Commissioned Programs, Brisbane South PHN. Lucille is an experienced senior health and human services executive with a special focus on community health and primary healthcare. Lucille was formerly the Community Business Optimisation Lead at Uniting Care Queensland and a Health and Human Services Management Consultant at Ernst & Young. Lucille has previously held senior positions in Diabetes Queensland and has worked as a program manager with a range of health service providers focusing on allied health and family and community health in Queensland and prior to that in Melbourne, Victoria. Lucille holds a Bachelor of Applied Science, Speech Pathology from Latrobe University, a Masters of Public Health from Monash University and a Graduate Certificate in Business – Philanthropy and Non Profit Studies from QUT.
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Mr Shane Rendalls
Johnstaff Advisory Pty Ltd

231 Challenges of co-design for integrated care planning

Abstract

1.

The Australian Department of Health and all States and Territories in Australia mandate consumer engagement for health service planning, program evaluation and research. However, what this engagement looks like varies from consultant-told-you through to active partnerships with communities and key stakeholders in the planning and co-design of integrated services.
There is the risk that services seize on co-design as the ‘new flavour’ in service planning and neglect foundations of strong service planning. This paper examines the benefits and potential risk of co-design and how to optimise outcomes for consumers, providers and funding bodies.

2.
In 2017, the PHN undertook a co-design process involving consumers and service providers to develop a model of care to support people experiencing severe mental illness in a primary care setting, integrating Mental Health Nursing and Peer Support with GP practices.
The year one evaluation found strong consumer engagement, high levels of consumer and staff satisfaction with the service model and achievement of positive outcomes for Consumers. The next stages for the project is to review the underlying program logic to ensure activity and outcome measures are clearly linked with project objectives while also noting the risks associated with outcome based funding in mental health. Activity pathways will also be mapped to enhance the consumer journey and optimise efficiency.

3.
The principles of co-design is that it is inclusive, respectful, participative, iterative and outcomes focused. As a process it is effective in engaging all stakeholders in the design of services that are consumer centred.

4.
The evaluation involved Consumers, Service Providers: Credentialed Mental Health Nurses, Peer Support Workers, Commissioning Staff and GPs.

5.
Jan 2019 - June 2019. Recommendations will be implemented by Oct 2019


6.
The ability to demonstrate value is critical for new and innovative services. Without this there is limited capacity to argue for ongoing funding or program growth and expansion. We discuss a range of planning and evaluation tools can be used in conjunction with co-design. These include:
-Collective Impact considering the perspective of all stakeholders, both in planning and evaluation
-Program Logic linking objectives and outcomes with resourcing and activity
-SMART Goals (developing specific, measurable, achievable, realistic and time related goals
-Process Improvement focusing on efficient service delivery
-Translational Research (translating evaluative findings to improvements in service delivery
-Capacity Building, fostering skills development at an individual, organisational and community level, to build sustainability and drive ongoing improvement.
7.
The methodology applied in this co design and evaluation is an example of best practice that can be applied to any integrated mental health program.
8.
Co-design and Best Practice Methodologies for service evaluation are essential to demonstrating outcomes from a consumer and clinical perspective. Best practice frameworks will be presented.

9.

While co-design is an enabling process, the key components of high quality and effective service planning require a broader and robust planning and evaluation toolkit to ensure:
• Measurable activities and outcomes linked to service objectives
• Streamlined and efficient service delivery
• Ongoing evaluation and quality improvement

Biography

Catherine is the Mental Health and After Hours Manger at Central and Eastern Sydney Primary Health Network (CESPHN). Her role focuses on the regional planning, integration and commissioning of services, working with the broader service system to assess regional needs and address service gaps. This work seeks to ensure vulnerable communities have access to quality health services that will meet their needs. As a psychologist and clinical supervisor, Catherine’s work has been focused in the adult community mental health and homelessness sectors. She has a passion for facilitating equity of access to services, driving service innovation and collaborative approaches to service design and evaluation.
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Dr Sue Lukersmith
Research Fellow
Australian National University

186 Embedding shared decision-making in a guidance framework - Guidance on the support needs of adults with spinal cord injury

Abstract

Introduction
In contrast to the evidence-based medicine ‘pyramid’ of scientific knowledge, the ‘Greek Temple’ model (2017) identifies five pillars. For the guidance topic, randomised controlled trials (experimental knowledge pillar) are unavailable. We used four pillars of knowledge to develop the guidance on support needs for people with spinal cord injury. The aim was to embed contextual and experiential knowledge in a shared decision-making framework, thereby enhancing the potential for integrated supports.

Methods
The guidance topic is complex. Sourcing the multiple pillars of scientific knowledge, the mixed methods included: systematic literature search of peer-reviewed published and grey literature; stakeholder survey; data analysis on support workers; international trends and frameworks to inform the structure of the guidance, stakeholder feedback and peer review of the draft. Essential to guidance development and particularly the decision-making framework was the extensive discussions and use of nominal group techniques with the working party of experts. The experts (practice and lived experience) ensured that experiential, contextual and practice knowledge informed consensus-based decisions.

Results
There are many factors to consider when deciding on the need for support services for a person with a health condition such as spinal cord injury. We ‘unpacked’ all these factors and ‘packed them up’ again into a framework. Three waves identified are: understanding the person, understanding the person’s context, understanding the person’s progress. The guidance provides information, resources and definitions, estimates for the level of support based on body function, assistive technology and other practical matters to further assist decision making.

Discussions
Critical to the decision making and integration of supports for a person is the expert knowledge gained from the lived experience, the fifth pillar (experiential knowledge from consumers and carers) and the fourth pillar expert knowledge (formal and tacit from practice). The decision-making framework provides a structured approach to embed shared decision-making. As the framework uses real world information, it is user friendly for the person, practitioners and decision makers to use.

Conclusions
The guidance acknowledges the person, their family and carers have expert knowledge. Use of the decision-making framework ensures collaboration and shared decision-making. Embedded in the decision-making framework is the need to understand, gain information from and about the person, their context and progress, looking beyond their neurological level of injury to determine their support needs.

Lessons learned
Sourcing expert and experiential knowledge in real terms can be difficult in terms of time, confidence and group dynamics. Many guidelines are developed with only notional consumer or lived experience input. The working party was involved in lengthy and collaborative discussions which significantly enriched the guidance outcome.

Limitations
Evaluating the impact of the guidance is problematic. Anecdotal evidence has been positive, although impact analysis may assist with future revisions of the guidance.

Suggestions for future research
Of interest for future research is the evaluation of the impact of the guidance. For example examining change (if any) to decision-making on the need for supports, or change to the configuration of supports pre and post use of the guidance in different settings.

Biography

For over 20 years Sue worked across health and disability sectors as a therapist, educator, consultant and then managing director of a multi-disciplinary rehabilitation practice. She moved into research in 2004. Her interests are people with a disability, community-based health and social services, implementation, policy and impact research. Research projects include care coordination and a case management taxonomy implemented in Australia and internationally, clinical practice guidelines (methodologist and developer); community based health and rehabilitation service development; expert commentary for research, researcher and writer for two World Health Organization international reports (the World Report on Disability and International Perspectives on Spinal Cord Injury) and the design, implementation and evaluation of a person-centred planning approach for people with complex needs (My Plan). She has over 40 publications. She is a freelance lead researcher within practice organisations; and holds a part time research position at the Australian National University and research associate at the University of Sydney.
Dr Jennifer Sumner
Senior Research Fellow
Alexandra Hospital, NUHS

74 Co-designing technology with elders: A systematic review

Abstract

Introduction
Co-designing healthcare technology or services has become mainstream. Co-design is patient–centred, as it considers their needs and requirements. Outputs can therefore be more relevant, improving uptake amongst end-users. In the advent of aging populations, there is now a growing interest in co-designing healthcare technology supporting elders to age in place. However, less is known about the health impact of these co-designed health technologies. The aim of this study is to evaluate the effectiveness of co-designed health technology supporting elders to age in place.

Theory/Methods
We conducted a systematic review to identify the impact of co-designed health technology on health and well-being outcomes. Secondary objectives were, i) to identify the co-design approaches used and in which contexts they emerge and, ii) to identify and describe barriers and facilitators of the co-design process with elders. Searches were conducted in MEDLINE, EMBASE, CINAHL, Science Citation Index (Web of Science), Scopus, OpenGrey and Business Source Premiere databases using MeSH terms and key words. Any studies describing the development of co-designed technology supporting aging in place with older adults (≥60 years) were eligible for inclusion. Both quantitative and qualitative data were extracted. Findings were summarised narratively.

Results
We identified 11,681 unique articles of which 28 studies provisionally met the eligibility criteria and were extracted. Studies were largely from Europe (n=23) and the remaining in America (n=1), Australia (n=3) and Canada (n=1). Of these, 17 studies targeted older adults (≥60 years old) and an additional 11 targeted specific medical conditions or concerns in older adults. Technological solutions included robotic devices providing social and assistive functions, online applications and software, SmartTV’s, computer games for exercise and rehabilitation, global positioning solutions, smart home incorporating home and body sensors and design of care pathways. Nineteen studies evaluated products in a real-world setting and only six evaluated health related or well-being outcomes. Operationally, co-design approaches vary greatly and in the intensity of elder involvement. For example, only five studies used a living lab during the development process. Analysis of qualitative data showed mutual knowledge building is important for effective co-design. Using varied routes of engagement and prototypes can facilitate the process. Co-design also dispelled misconceptions that elders are poor technology designers and resolved end-user concerns of using technology, which may hinder later adoption.

Discussion
A limited number of studies evaluated health and well-being outcomes. Studies frequently reported high elder engagement, mutual knowledge building and acceptance of technology by elders. This challenges stereotypes that elders are disinterested and incapable technology users.

Conclusion
Well-designed evaluations on the impact of applied co-designed technology are needed to establish the impact of such products.

Lessons learned
Co-design is an evolving methodology, which is frequently misinterpreted and misused in practice. The variation in co-design terminology and methodology further complicates the matter.

Limitations
The terminology and methodology surrounding co-design in health is complex and diverse, which may have led to us not identifying relevant articles.

Suggestions for future research
We identified a need for rigorous evaluation of co-designed aging in place technologies.

Biography

Dr Sumner currently works as a health services researcher based within the National University Health System and National University of Singapore. Her research interests include chronic disease management, eldercare and the application of health technologies in these areas. Current activities include the evaluation of a new integrated inpatient and outpatient care model at Alexandra Hospital; the development of a multi-morbid disease management programme; application of artificial intelligence to manage the treatment of chronic disease; and the development of technology to support aging in place.
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