Table 2.

Priority topics, grouped by descriptive themes for scoping future Cochrane Reviews of interventions in health communication and participation

	Number of responses (n)
Theme 1: health service-level issues	64
Breakdowns in communication and coordination of care between and within health services are common.	15
The term patient-centred care is poorly understood and implemented by health services and health professionals.	14
The quality and safety of patient care can be compromised by health services (particularly hospitals) not treating patients holistically.	13
Cultural safety (eg, language considerations and cultural needs) is not well embedded in health services.	10
Informed consent for treatment and research does not always happen.	6
Not enough time is given to allow good communication between health professionals and patients.	6
Theme 2: health professional-level issues	50
Some health professionals do not understand or ask patients about their preferences and priorities.	14
Some health professionals do not provide enough information to patients (some do not think it is a priority).	15
Health professionals do not always provide enough support for patient decision-making.	10
There are often two-way barriers to adequate communication and participation (eg, disability of individual plus discomfort of health professional).	7
Health professionals do not always know how to gauge how much their patients understand.	4
Theme 3: consumers and carer issues in their own care	37
Patients do not always understand their health problems, treatment options or their rights.	10
Consumers and carers do not always know about all the options or services that exist.	9
Consumers and carers are not always able to participate actively in their care.	5
The general public does not always have enough health literacy to navigate the health system and make health decisions.	5
Patients often experience information overload and are unable to retain the important information.	4
Consumers and carers have difficulty understanding key medication information.	4
Theme 4: issues for broader consumer and carer involvement	30
Health researchers do not adequately involve patients in research, nor share their findings.	19
Health services do not properly involve consumers and carers in health service planning and design.	11
Theme 5: accessibility of high-quality health information	18
‘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.	18
Theme 6: ageing and end-of-life care	8
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.	8