Background
Methods
Context
Methods to select and refine priority topics
Workshop participants and recruitment
Participant group | Operational definition | Target (n) | Additional characteristics |
---|---|---|---|
Consumer/carer representativesa | 15 | Across the participants groups, we sought to include people with the following backgrounds or diversity of experiences: • Indigenous • Culturally and linguistically diverse • Geographic location • Age • Health settings (i.e. community vs. acute care) • Health conditions | |
Health professionals or health service managers | Has a specific role or interest in health communication and participation (with or without a clinical role), across a mix of professional backgrounds (i.e. doctor, nurse, allied health professional, quality manager or health charity) | 10 | |
Health policy-makers or researchers | Has a specific role in policy or in funding research or services in health communication and participation | 5 |
Workshop methods
Methods to identify five priority Cochrane Reviews
Thematic analysis of workshop discussions
Mapping priority topics against CCCG review portfolio
Results
Participant demographics
Characteristic | Consumer/carera (n = 14) | Professionalb (n = 14) | All (n = 28) |
---|---|---|---|
Age (years, mean ± SD, range) | 56 ± 14 (37 to 85) | 44 ± 11 (30 to 61) | 51 ± 14 (30 to 85) |
Gender (female; n, % of total) | 11 (79) | 13 (93) | 24 (86) |
Participant ‘perspective’c (n) | |||
Consumer representative | 11 | 11 | |
Carer representative | 4 | 4 | |
Health professional | |||
Doctor | 1 | 1 | 2 |
Allied health professional | 1 | 2 | 3 |
Nurse | 2 | 2 | |
Health service manager (non-clinical role) | |||
Acute/hospital setting | 4 | 4 | |
Community health setting | 1 | 1 | |
Health charity/not-for-profit organisation | 1 | 2 | 3 |
Policy-maker (government department or agency) | 4 | 4 | |
Researcher | 1 | 1 | |
Research funder | 1 | 1 | |
Highest education level (n, % of total) | |||
Secondary school | 3 (21) | 0 (0) | 3 (11) |
Occupational certificate or diploma | 1 (7) | 0 (0) | 1 (4) |
University bachelor’s degree | 3 (22) | 5 (36) | 8 (29) |
University post-graduate degree | 7 (50) | 9 (64) | 16 (57) |
Aboriginal or Torres Strait Islander (n, % of total) | 0 (0) | 1 (7) | 1 (4) |
Non-English-speaking background (n, % of total) | 1 (7) | 2 (14) | 3 (11) |
Area of residence (n, % of total) | |||
Metropolitan | 12 (86) | 11 (79) | 23 (82) |
Regional | 2 (14) | 3 (21) | 5 (18) |
Flow of priority topics through the workshop
Priority topics selected for systematic reviews in health communication and participation
Health communication and participation research priority topics | Votes (n) |
---|---|
Top 12 priority topics | |
1. The term patient-centred care is poorly understood and implemented by health services and health professionals | 13 |
2. Some health professionals do not provide enough information to patients (some health professionals do not think it is a priority) | 12 |
3. Breakdowns in communication and coordination of care between and within health services are common | 11 |
4. Health services do not properly involve consumers and carers in health service planning and design | 10 |
5. There is not enough support or understanding about the needs of older people and end-of-life decisions are poorly understood by patients, families and the community | 9 |
6. Consumers and carers do not always know about all the options or services that exist | 9 |
7. The quality and safety of patient care can be compromised by health services (particularly hospitals) not treating patients holistically | 9 |
8. Transitions between health services are a particularly vulnerable communication time | 8 |
9. There are often two-way barriers to adequate communication and participation (e.g. disability of individual plus discomfort of health professional) | 7 |
10. The general public does not always have enough health literacy to navigate the health system and make health decisions | 7 |
11. Consumers and carers are not always able to participate actively in their care | 7 |
12. Some health professionals do not understand or ask patients about their preferences and priorities | 7 |
Priority topics not ranked in the top 12 | |
13. Patients do not always understand their health problems, treatment options or their rights | 5 |
14. Health professionals do not always provide enough support for patient decision-making | 4 |
15. ‘Official’ health information can be contradictory and hard to understand, both written and online. Consumers and professionals do not know how to find and assess good quality information online | 4 |
16. Informed consent for treatment and research does not always happen | 3 |
17. Cultural safety is not well-embedded in health services | 3 |
18. Health researchers do not adequately involve patients in research, nor share their findings | 3 |
19. Patients often experience information overload and are unable to retain the important information | 2 |
20. Not enough time is given to allow good communication between health professionals and patients | 1 |
21. Consumers and carers have difficulty understanding key medication information | 1 |
22. Health professionals do not always know how to gauge how much their patients understanda | Not applicablea |
Refinement of the priority topics
Theme 1: Culture and organisational structures
“Do doctors feel it’s their job to provide information? Their thinking can be, ‘the next person will do this’.”(From priority topic 2)
“The construction of the concept of quality and safety has an implicit hierarchy, with the consumer at the bottom (i.e. having things done to you by experts).”(From priority topic 7)
Theme 2: Health professional attitudes and assumptions
“Assumptions are made by health professionals about the ability of patients to understand information, how much information they want, and their priorities.”(From priority topic 2)
“Health professionals can be reluctant to accept a patient-centred model of care as they think that it means ‘you [the patient] will tell me to do things differently’.”(From priority topic 1)
Theme 3: Inconsistent experiences of care
“With my mother whose first language is not English, I am invited into the consultation by the doctors with open arms. But when my husband was in emergency I wasn’t allowed to be in the consultation, I was told to get out.”(From priority topic 11)
“Hospitals tend to pick people [for consumer advisory committees] who are not reflective of the diversity of the people they serve. They often go for the low-hanging fruit (retired, white, female and well-educated).”(From priority topic 4)
Theme 4: Lack of shared understanding in the sector
“Health literacy is mostly looked at from professional perspective. What is a consumer perspective of what health literacy means? It’s not often asked.”(From priority topic 10)
Populations and groups for inclusion in future Cochrane Reviews
Interventions that could be tested in future Cochrane Reviews
CCCG intervention taxonomy category [37] | Intervention described by participants | Priority topic numbera | Total | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | |||
Interventions directed to the consumer | Health information tailored to different audiences and in multiple formats | X | X | X | X | X | 5 | |||||||
Building health literacy skills of consumers | X | X | X | 3 | ||||||||||
Local and community support interventions | X | X | X | 3 | ||||||||||
Community education | X | 1 | ||||||||||||
Interventions from the consumer | Consumers are partners at all levels of care | X | X | X | X | X | 5 | |||||||
Families and carers, in particular, are partners at all levels of care | X | X | X | X | X | 5 | ||||||||
Using patient stories | X | X | 2 | |||||||||||
Interventions for communication exchange between providers and consumers | Patient-controlled electronic health records and related digital tools | X | X | X | X | 4 | ||||||||
Communication tools for health professionals | X | X | X | X | 4 | |||||||||
Decision aids and decision-making support strategies | X | X | 2 | |||||||||||
Care plans | X | X | 2 | |||||||||||
Interventions for communication between consumers | Peer-support interventions | X | X | X | X | X | X | 6 | ||||||
Interventions for communication to healthcare professionals from another source | Education of health professionals in communication or partnering with consumers | X | X | X | X | X | X | X | X | X | X | 10 | ||
Communication skills training for medical students | X | X | X | 3 | ||||||||||
Strategies to support clinicians having difficult conversations | X | X | 2 | |||||||||||
Better selection of health professionals | X | 1 | ||||||||||||
Service delivery interventions | Health service policies and standards for communication and participation | X | X | X | X | X | X | X | 7 | |||||
Culture and attitude change within health services and health professionals | X | X | X | X | X | X | X | X | 8 | |||||
Changes to the structure and delivery of care | X | X | X | X | X | X | 6 | |||||||
Strategies to build on and share good practice within the health system | X | X | X | X | X | X | 6 | |||||||
Other | Other (not grouped) | X | X | 2 |