Patient and public engagement at the design stage Manuel Gomes 12 May, 2016 theta.lshtm.ac.uk

NIHR Career Development fellowship Context NIHR Career Development fellowship Development, assessment and translation of methods to improve the use of big observational data to inform health decision making. Confounding Missing data health economic decision modelling theta.lshtm.ac.uk

Refine the focus of the proposal How might patients/public help me? DESIGN Refine the focus of the proposal Implications of missingness for confounding adjustment Inform the choice of proposed methods Typical confounding and missing data mechanisms Comment on the Lay summary. theta.lshtm.ac.uk

Disease-specific insights How might patients/public help me? ANALYSIS Disease-specific insights Inform setting-related confounding missingness mechanisms Inform sensitivity analysis Departures from ‘no unobserved confounding’ and ‘missing at random’ assumptions. Discuss implications of my research to practice and how best to communicate the findings to the public theta.lshtm.ac.uk

Takes (much) longer that you expect Who to contact? Be prepared Takes (much) longer that you expect Even after you discount that it may take longer than you expect. Festive seasons/holidays You may have to contact more than one PPI source Some of them may lead you to a dead end. theta.lshtm.ac.uk

Who to contact? London Research Design Service (UCL) NIHR INVOLVE KCL NIHR Collaboration for Leadership in Applied Research (North Thames) NIHR Clinical Research Networks (North West London) CCG user groups (London) The Farr Institute (London) - patient panel theta.lshtm.ac.uk

Meetings with the PPI groups Implementation Meetings with the PPI groups Farr Institute: Most panel members are not based in London NIHR Clinical Research Network: group meets quarterly Survey Determinants of treatment allocation (time-invariant and time-varying) Reasons for the incomplete health records, and attitudes to data collection Both multiple choice and free text questions – reviewed by panel coordinators. theta.lshtm.ac.uk

Mostly complete, but arrived 1 week before deadline Results Survey respondents 5 patients (Farr Institute) 6 patients/carers (NIHR CRN North West London) Mostly complete, but arrived 1 week before deadline Responses suggested that most of these public members are more educated than the average lay person. Most responses were aligned with prior knowledge on the topic Some new input: Both patient and doctor attitudes towards new drugs Distinct missing data mechanisms when surveys are completed during the clinical appointment versus at home theta.lshtm.ac.uk