What patients need
(Assessing the quality of information. Picker Institute, 2006)
Picker Institute Europe has conducted a number of research studies to examine whether available information meets patients needs including:
Accessing information about health and social care services
Information needs for people with conditions affecting their appearance
Assessing the quality of information to support people in making decisions about their health and healthcare
This study for the Department of Health was designed to:
- assess quality and effectiveness of information available in the UK on or via the internet on four conditions: chronic obstructive pulmonary disease, arthritis, healthy eating/obesity, and MMR vaccination
- examine whether/to what extent information leads to better decisions or reduces anxiety
- explore the added value of accrediting information providers.
The study found good quality information. It also found significant unmet need and room for improvement, including:
- developing and evaluating information materials with patients and other stakeholders to ensure that the information provided matches the information needs
- making sure that information contains enough clinical detail to help patients make treatment choices
- providing clear and comprehensible explanations of what is 'known' and 'not known' about treatment effectiveness
- making information materials more widely available and easily accessible, so that patients and clinicians can use them to inform their decisions.
The report concluded that a scheme to accredit information providers could be welcomed by patients and the public and by information providers themselves.
Accessing information about health and social care services
A second study for Department of Health examined how patients, service users and carers found out about locally available services and how to access them. This research found that the people were most likely to request information about:
- voluntary sector support groups
- support for the family or carer(s)
- condition-specific services
- the financial benefits available, and how to claim them
- how to comment on or complain about services.
The study also found that:
- health professionals do not systematically or proactively provide information about accessing local services
- there is a lack of cross-boundary co-ordination between information providers
- signposting could be improved - information exists, but it can be very hard to find.
Picker Institute Europe has also published an accessible summary of this resarch At a Crossroads Without Signposts.
Information needs of people with conditions affecting their appearance- summary and recommendations
Picker Institute Europe conducted a three year study for the Healing Foundation to explore the information needs of people living with conditions that affect their facial appearance. The research found important gaps in the information available, notably a lack of information about sources of emotional and social support. Three separate research reports were published:
The views and experiences of patients and the health professionals involved in their care