Patient and Public Involvement in Data Collection

Further to last fortnight’s News blog article [1] I have found a further study in which patients participated in data collection.[2] This paper, by and large, corroborates the procedural requirements for public and patient involvement in data collection that I had specified. For example, it was necessary for lay observers to undergo DBS checks; the ethics approval form had to include lay observers; and training had to be arranged for the lay observers. Recruitment of lay observers proved more difficult than anticipated. The lay observers had a positive experience and brought a different perspective to the research according to feedback. The extent to which observer perspective is a good thing is, however, contestable. Generally I think the role of the observer is to collect data for analysis, and not colour it with a ‘perspective’. The professional researchers on the project felt that having lay researchers involved increased their workloads. The thorny issues of payment and selection do not seem to have been fully discussed in this paper. Also not discussed was the idea that, in qualitative research, respondents may be less inhibited to disclose information to a lay observer. Let the debate continue!

— Richard Lilford, CLAHRC WM Director

References:

  1. Lilford RJ. Patient and Public Involvement: Direct Involvement of Patient Representatives in Data Collection. NIHR CLAHRC West Midlands News Blog. 4 August 2017.
  2. Garfield S, Jheeta S, Jacklin A, Bischler A, Norton C, Franklin BD. Patient and public involvement in data collection for health services research: a descriptive study. Res Involve Engage. 2015; 1: 8.
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