Desirability and expectations of the UK MS Register: Views of people with MS

• A qualitative dimension to understanding users’ desires regarding, and expectations of, health registers.
• That there is a difference between what users think health registers would be used for, and how they want them to be used.
• Users wish for social contact, exchange, and networking functions, from a health register.

BackgroundInternet-based health registers are increasingly commonly used for health promotion and medical research, yet little is known about what the patient groups who help form the basis of such registers expect from these tools. Mismatches between patient expectations and the register design may limit the long-term utility of such registers.ObjectiveThis study elicited the views of people with Multiple Sclerosis (PwMS) on the desirability and expectations regarding a UK Register for MS.MethodsParticipants were recruited through a range of traditional means (newsletters, adverts, word of mouth), as well as via the Internet, to obtain a broad sample of PwMS. Semi-structured interviews were conducted over the telephone, and the questions asked about: the desirability of the Register; what the participants envisaged the Register actually being used for; and what they hoped the Register could be used for.ResultsThe majority of individuals’ points postulated that a UK MS Register would be useful, but a range of potential concerns were identified by the sample, such as security, accessibility for all PwMS, and the validity of self-report data. Analysis of the responses revealed a difference between what PwMS thought the Register would be used for, and how they wanted it to be used, particularly in relation to a desired social contact, exchange, and networking function.ConclusionsThe security and accessibility of the website, the validity of the data, and mismatches between the expected and actual uses, are all issues of importance in the development of e-health tools, if PwMS are to be successfully engaged over time.