|Arthritis Research Campaign||Audit of needs for information on arthritis|
Arthritis Research Campaign (arc) is the fourth largest medical research charity in the UK. It funds research into arthritis and other musculoskeletal diseases and educates doctors, medical students, allied health professionals and people with arthritis on these subjects. arc currently publishes over 90 booklets and leaflets on specific conditions, drug treatments and the challenges of living with arthritis. These are distributed via clinical settings and practitioners and can also be downloaded from the internet. Given that nearly two and half million such leaflets are distributed each year, there is clearly a requirement for this information. However, arc lacked feedback from users as to whether it was answering their questions effectively and needed to find out whether it could improve the content and mechanisms it uses to reach people and thereby meet their information needs better.
Eleven group discussions were conducted with people with different groups of conditions at different stages of a ‘journey’ from first symptoms, to diagnosis, through to living with a condition for many years. They included two groups of people who suspected they might develop arthritis in the future and a group of people caring for someone with arthritis. Six depth interviews were conducted with people with rarer conditions such as lupus and juvenile idiopathic arthritis. Some of the groups were with people who actively used the internet to seek out information while others were made up of people who either did not use the internet or preferred other methods for finding information. The groups were pre-tasked to look for information about their condition and according to their preferences, either via the internet or by looking at booklets they were sent. Some of these booklets were published by arc, some by other charities.
The research showed that much of what arc is doing is along the right lines; it uses the main channels that people favour in looking for information and what it tells them addresses many of the issues that people want help with in a pretty accessible way. The key obstacle was the difficulty of ensuring that the people who wanted the information could find it or were given it. The research provided interesting insights and valuable information to help arc in planning the development of their information provision including how people varied in their desire for information (a working typology was provided), the potential for providing information to help prevent conditions arising, a catalogue of questions that people would like answered, the relative roles of booklets and the internet in addressing them, and guidance on the tone and design of the information.