The research-policy divide: is co-design the answer?

Co-design has become a buzzword in health policy and service design. While the philosophy behind the approach is inspiring, the methodology is often misunderstood and ‘authentic’ co-design can be difficult to achieve. 

 

Drawing on a hopeful but overly ambitious co-design proposal from the ACT this presentation explores common challenges for co-design projects. With a focus on academic-government-community partnerships, I get real about factors that influence the success of co-design activities in the development of services. Is the current trend is all that it’s cracked up to be?


Affiliation: School of Medicine and Psychology, ANU 

Tobacco smoking is the single most important preventable cause of ill health and death in Australia. E-cigarettes are products that create aerosols containing flavouring agents that are inhaled and simulate tobacco smoking. They can serve as a “gateway” to nicotine addiction and tobacco cigarette smoking.

 

Trends in tobacco and e-cigarette use between 2015 and 2022 were investigated in an ACT sample using routinely collected population health survey data. 

 

The analyses are based on a multi-year dataset comprising 9,978 participants aged 18 years and over who participated in the ACTGHS between 2015 and 2022. Respondents were asked to self-report their tobacco and e-cigarette use. 

 

Between 2015 and 2022, the proportion of adults who reported that they were daily/occasional smokers remained stable. In 2022, the proportion of male non-smokers was significantly lower than females (45.8% vs 54.1%).

 

Between 2015 and 2022, the proportion of adults who reported that they had ever used e-cigarettes was significantly higher in 2022 than in all years except 2021. Between 2018 and 2022, there was a 4-fold increase in the proportion of adults aged 18–24 years who had ever used e-cigarettes.

 

Self-reported data show that e-cigarette use is increasing over time, particularly among younger adults and females which will have significant implications for public health policy.

 

The Minister for Health and Aged Care recently announced funding measures to protect Australians against harm caused by tobacco and vaping products. The monitoring of tobacco and e-cigarette use over time will help inform the impact of these measures

 

Sommer Sherwood, Pramod Adhikari, Warren Holroyd, Elizabeth Chalker
 
 

1.     ACT Health Directorate, Phillip, ACT, 2606

Describe the prevalence of frailtyin patients with advanced chronic kidney disease (CKD) and those undergoing haemodialysis (HD). 

 

The European Renal Best Practice Group endorses the assessment of functional status and frailty in patients with CKD and those undergoing HD. Though several tools exist, there is no current consensus on the most appropriate tools to implement in practice. 

 

This prospective single-centre, observational cohort study enrolled patients with advanced CKD (GFR<20ml/min) or those undergoing HD with opt-out consent model. Participants were assessed for Fried frailty phenotype during routine outpatient clinic. PearsonChi-squared and Wilcoxon-rank-summ testing examined population differences. 

 

147 CKD and 107 HD participants were recruited. Median age 70 years (IQR 56-79), 62% identifying as male. There was no statistically significant difference in age or sex profile among CKD or HD participants (p=0.65, p=0.41, respectively). Within the entire cohort, unintentional weight loss was evident in 18.5%, 35.4% reported inactivity, 46.5% reported exhaustion, 59.1% had slow walk speed and 64.6% demonstrated poor grip-strength. There was no statistically significant differences in any of these domains between CKD and HD participants (PearsonChi2=1.89, p=0.17, PearsonChi2=0.26, p=0.61, PearsonChi2=0.89, p=0.35, PearsonChi2=0.68, p=0.41, PearsonChi2=0.00, p=0.98, respectively). In this cohort, 43.3% of participants had Fried phenotype frailty; an additional 25.6% were prefrail. There was no difference in frailty prevalence rates between CKD and HD participants (PearsonChi2=0.23, p=0.89). 

 

Fried Frailty phenotype is highly prevalent in both HD and advanced CKD, reflecting high health care resource utilisation. Exploring effective and acceptable frailty interventions is warranted with opportunity to offer prehabilitation before the introduction of HD to optimise outcomes.


Alice L Kennard1,2, Suzanne Rainsford1, Kelly Hamilton2, Nicholas Glasgow1, Kate Pumpa3,4, Angela Douglas4, Girish S Talaulikar1,2
 
 

1.     College of Health and Medicine, The Australian National University, 2601

2.     Department of Renal Medicine, Canberra Health Services, Garran, 2605 

3.     School of Public Health, Physiotherapy and Sports Science, University College Dublin, Ireland 

4.     Discipline of Sport and Exercise Science, Faculty of Health, University of Canberra, 2617

With the end in mind, families ask the “how long” question. They want to know what to expect, but importantly, how much time they have left with their loved-one. Understanding and predicting the length of time to death once the person with a life-limiting illness becomes unrousable and deemed to be imminently dying is crucial for clinicians and families. For clinicians, answers to this question will aid decision making, focus care and ensure appropriate support for the family.

The research sought to build on previous research to determine the length of time between becoming unrousable and death.

This is a retrospective consecutive cohort study of 2449 patients between 2017 and 2021 who received specialist palliative care as hospice inpatients, or at home. 50,332 associated Australia-modified Karnofsky Performance Status (AKPS) scores were analysed. 

Using Kaplan-Meier survival analysis the time from the first AKPS 10 (unrousable) to death was analysed to determine the duration of patients’ terminal phase.

From the first AKPS 10 score, 51% of patients were unrousable for longer than one day, with a mean of two days, which is similar to previous research. Adjusting for covariates, the likelihood of death within four days of becoming unrousable is 80%. Four percent of outliers survived past seven days, the longest being 16 days.

This study validates previous findings. Utilising AKPS 10 data provides clinicians with confidence when responding to the “how long” question. 

This research provides answers to help families prepare for their loved one’s death.

 

 
Tricia O'Connor1, Wai Man (Raymond) Liu2, Juliane Samara1
 
 

1.     Clare Holland House, Calvary Health Care, Barton, ACT, 2600

2.     The Australian National University, Canberra, ACT, 2601

Supported decision making uses a person’s support network to help them participate in decision making. This approach affirms human rights, individual autonomy, and inherent dignity, especially in the context of cognitive disability. Recent legislation changes now include supported decision making for the first time, however, understanding how to implement these changes in the acute setting is lacking. 

 

To explore clinician’s perspectives of the barriers and enablers to using supported decision making in an acute setting.

 

A qualitative study design with mixed purposive sampling was used. Twenty-six semi-structured interviews (face-to-face or videoconference) were completed with senior hospital clinicians from medical, nursing, and allied health disciplines. Transcribed interviews underwent latent coding and thematic analysis using an inductive approach.

 

Common decisions where supported decision making could be used included discharge location, medical treatment, and end-of-life care. Four main themes were identified: (1) understanding and practice; (2) hospital and legal systems; (3) collaboration, communication, and engagement; (4) time and environment. Barriers and enablers existed within each of the themes. 

 

Several barriers to the use of supported decision making in hospital were identified by clinicians, with change needed at individual and system levels in addition to legislation amendments. Training and education, resources, and development of frameworks to guide the process are essential next steps. 

 

The results provide insight into challenges clinicians face in supported decision making in an acute health setting and will guide the implementation of next steps.

 

 
Sarah Sowry1,2, Malith Ramasundara2, Patrice Higgins2
 
 

1.     University of Wollongong, Wollongong, NSW 2500

2.     Canberra Health Services, Garran, ACT, 2605

To understand the lived experience of frailty in the advanced chronic kidney disease (CKD) context and how this impacts interactions with healthcare providers and medical decision-making. 

 

Frailty has been characterised as a state of accelerated aging with increased vulnerability to adverse outcomes and non-routine recovery. The lived experience of individuals with CKD and frailty have yet to be examined. 

 

Participants with advanced CKD and Fried Frailty phenotype and their caregivers were invited to participate in in-depth interviews or focus group workshops to gain a rich description of key informants’ experiences of frailty. Interviews were recorded, transcribed and coded for meaningful concepts and analysed using inductive thematic analysis using a constant comparative method of data analysis employing Social Cognitive Theory. 

 

Two focus groups( N=4, N=2), seven individual interviews and three caregiver interviews were analysed prior to saturation of themes. Experiences of frailty were described across four domains: the self, the body, the mind and impact on relationships; yielding themes of: the normative influence of capacity, the defining feature of reliance on help (personal or equipment), the dynamic state of frailty, erosion of identity, unresolved symptom burden, non-routine recovery, contracted social sphere, the mind-body continuum, and proximity to death. Experiences of frailty were punctuated by falls, comorbidity and prolonged hospitalisations. 

 

Conclusions 

Frailty is a pejorative, personal, subjective experience defined by deterioration from a previous normative baseline and reliance on aids and carers. Patients and their carers strive to maintain the status quo. The dynamic state of frailty needs to be considered in decision-making and future planning.

 

Alice L Kennard1,2, Suzanne Rainsford1, Kelly Hamilton2, Nicholas Glasgow1, Kate Pumpa3,4, Angela Douglas4, Girish S Talaulikar1,2
 
 

1.     College of Health and Medicine, The Australian National University, 2601

2.     Department of Renal Medicine, Canberra Health Services, Garran, 2605 

3.     School of Public Health, Physiotherapy and Sports Science, University College Dublin, Ireland 

4.     Discipline of Sport and Exercise Science, Faculty of Health, University of Canberra, 2617