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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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