| Literature DB >> 32551135 |
L Luna Puerta1, H E Smith1,2.
Abstract
BACKGROUND: Patient and Public Involvement (PPI) in health research entails doing research 'with' the public. Successful PPI requires a diversity of patients' perspectives and experiences. In Singapore, including the public's voice in research is still in its infancy and different ways of involving the public have to be explored.Our aims were to describe a PPI initiative that enables members of the public to share their ideas and opinions about health research, and to assess the feasibility, accessibility and utility of the initiative.Entities:
Keywords: Collaborative research; Community-based methods; Empowerment; Health research; Participatory research; Patient and public involvement and engagement
Year: 2020 PMID: 32551135 PMCID: PMC7298814 DOI: 10.1186/s40900-020-00205-6
Source DB: PubMed Journal: Res Involv Engagem ISSN: 2056-7529
Fig. 1Photograph of Serangoon Gardens Market & Food Centre. Photo Credit: Cynthia Chew [23]
Overview of the population-based study
| This population-based study, coordinated by Lee Kong Chian School of Medicine in collaboration with the National Healthcare Group (Singapore) and Imperial College London, was established to identify the genetic and environmental factors that underpin the development of chronic conditions, such as obesity, diabetes, and cardiovascular disease, in Singapore. Ultimately, the goal is to use this knowledge to develop novel ways of predicting, preventing, detecting early and treating chronic diseases in Singapore. | |
| The genetic and medical predispositions differ between population, and to date similar studies have been conducted in the US, UK and Germany. However, 60% of the world’s population do not have European heritage and this biobank will improve the understanding of disease predispositions in South East Asians. The phenotypic, physiological and biological measurements together with long-term follow-up, will enable the study of the complex interrelationships between environmental, lifestyle and genetic factors on disease risk [ |
Fig. 2Example of cue card containing a question and prompts for the “PPI Hawkers”
Fig. 3Design of the “PPI Hawker”, building on the PPI Café
Fig. 4The ten stages in organisation of the “PPI Hawker” (In preparing for this series of 10 stages, attention has been paid to the UK Standards for Public Involvement in Research [46])
Impact of the “PPI Hawkers” on the population-based study design
| After the “PPI Hawker” Pilot, members of the Steering Group were receptive to the public’s suggestions to allay concerns about data security by sharing more information on how participant data is stored and by requesting additional consent for data sharing with commercial collaborators (Question 1), to consider how the research data could be incorporated into the individual’s health records (Question 2) and to regularly update participants on the study’s progress (Question 3). | |
| After the two subsequent “PPI Hawkers” the researchers on the population-based study introduced a number of changes to the research process in response to the public’s comments and support. Researchers began establishing new recruitment strategies, by formalising agreements with various employers (Question 1) and setting up a community Advisory Group to provide regular and more detailed advice on matters arising as the project progresses. (Question 3). Further changes included amendments to the informed consent form: | |
| i) An improved explanation of the term ‘incidental findings’, using simpler terms and detailing the pros and cons of being informed of these abnormal results. | |
| ii) Giving study participants the option to decide whether they would like to have their incidental findings communicated to them or not (Question 4). | |
| iii) Including a question relating to data sharing. It was decided to offer research participants at initial recruitment the opportunity to choose who in the future their data could be shared, thus negating the need to recontact them (Question 2). The four options to select from are (i) Universities/ academic institutions, (ii) Health institutions, (iii) Government institutions and/or (iv) Commercial bodies. |