[A version of this item appears in: Dementia: the Latest Evidence Newsletter (RWHT), Volume 2 Issue 3, October 2011].
This research project examined the needs, preferences and use of information by people, as relating to a variety of choices they may make. The kinds of choices in question involved the type of treatment they might receive, whether or not to undergo screening, how to care for loved ones etc. One of the different life stages under consideration was the care of people with dementia. The research also focused on four other health issues, namely: antenatal screening and the decision to end a pregnancy because of foetal abnormality; sickle-cell disorder; and lymphoma.
The research was conducted in three stages: (1) examination of the kinds of information that people need, prefer and use in relation to decision-making; (2) investigation of people’s response to, and use of, different types of information available in different formats; and (3) investigation into whether people’s views, preferences and reported use of different types and formats of information varied systematically according to socio-economic status, ethnicity, gender or age.
A number of generalisable implications have been inferred by the researchers:
- The research generally supports policy initiatives aiming to provide high quality information on health care and improve access to information, including signposting to high quality information sources and helping in the appraisal of information quality. More emphasis is needed on the provision of balanced, information based on people’s personal experience. Carers of people with dementia noted the absence of information they need to make decisions about where their relatives should live.
- It is important to improve the availability and accessibility of information on particular health issues such as dementia, and to support people facing particular decisions (such as where a relative should live).
- Investment in internet-based information resources is justifiable, but continued efforts are needed to make this information accessible and relevant to all, regardless of social position.
- The provision of information to support independent decision-making by patients could risk overlooking the importance of supportive professional-patient interaction. It could result perversely in a deterioration in decision quality and patient experience.
- Health professionals should be aware of – and respond to – legitimate expectations people have about health information providers. They need opportunities to work with patients to enhance their ability to make effective use of information from various sources.
- When recommending sources of information, health professionals should remember that information based on the “personal experiences” of others may be helpful to people when identifying and appraising options (for example in imagining what it might be like to live with certain decisions or coping with on-going health problems).
- When health professionals make recommendations to access information based on personal experience they should avoid selection bias and clarify that they do not intend to imply particular individual stories should be used as exemplars to be copied.
- While information provision may be important, so too are “talking it through” and being a caring presence.
- Responding to individuals’ personal information needs (i.e. needs contingent on the health issues and decisions being faced) is preferable to information provision based on the age, gender or socio-economic position of the recipients.
- Further research is needed on whether and how people use tools such as patient and user reviews, ratings and feedback to make comparisons and decisions about health and health care.
- Further research is needed into whether and how participation in social networking health groups might influence people’s views and behaviour.
- Prospective studies into health-related decision-making might help professionals to target their informational support.
- Access to high quality information on health care is important, as is the role of health professionals in mediating this information. More emphasis is needed on the provision of well-collected and balanced information based on personal experiences.
Note: This document was produced as a result of a research project commissioned by the Service Delivery and Organisation (SDO) programme and was managed by the National Coordinating Centre for the Service Delivery and Organisation (NCCSDO) formerly at the London School of Hygiene & Tropical Medicine. The NIHR SDO programme is now managed by the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton.
Wyke, S. Entwistle, V. [and] France, EF [et al] (2011). Information for choice: what people need, prefer and use. Southampton: NIHR Service Delivery and Organisation (SDO), January 2011. (SDO Project no. 08/1710/153).
There is also an executive summary of this report:
Note: A further article touching upon dementia-related issues was produced as a result of this research project:
Thompson, AG. France, EF. (2010). One stop or full stop? The continuing challenges for researchers despite the new streamlined NHS research governance process. BMC Health Services Research, May 13th 2010, Vol.10(124), pp.1-8. (Click here to view the PubMed abstract).