Held by Patient trainers Alero Dabor and Nanik Pursani

1. Implementing Patient & Public
Involvement in Research
Alero Dabor and Nanik Pursani
Jonathan Paylor
PPI advisor, NIHR Research Design Service London
Duncan Barron
PPI lead, NIHR Research Design Service South East

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Overview of Workshop
• Understand what effective Patient and Public Involvement
(PPI) is and is not in the context of research
• Identify how patients and the public can be involved at
each stage of the research cycle
• Consider ways of building PPI into RfPB grant applications

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
What is PPI?
• Actively working in partnership with patients and members
of the public to plan, manage, design and carry out
research
• “Research being carried out ‘with’ or ‘by’ members of the
public rather than ‘to’, ‘about’ or ‘for’ them”.
INVOLVE
• Distinct from participation (e.g. recruiting patients to
clinical trials)

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Who can be involved?

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Who can be involved?
•Patients
•Carers
•Members of the public (someone who is not a health
professional)
•Community Groups e.g. multi-faith groups
•Former patients/Survivors
•Charities e.g. Asthma UK
•Patient support groups e.g. Terrence Higgins Trust
•Family members; parents, partners, young people
•Schools

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Effective vs. Tokenistic PPI

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Effective PPI
• Ensuring research questions reflect the needs and
priorities of patients and the public
• Ensuring methods and procedures are feasible and
appropriate
• Ensuring information is relevant and accessible to
those being recruited to the study
• Identifying dissemination channels relevant to
patients/the public and developing outputs that are
accessible to a lay audience

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
• Treating PPI as a tick box exercise
• Being closed to patient/public perspectives
• Not following up with patients and the public after they
have been involved
• PPI plans that are bolted-on to a study with no clear
rationale
Tokenistic involvement

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Diagram from NIHR http://www.nihr.ac.uk/patients-and-public/how-to-join-in/the-research-cycle

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
• Identifying and prioritising: meeting to decide on an evaluation strategy for a
project designed to support people with cancer to return to work.
• Commissioning: sitting on NIHR panels and reviewing funding applications.
• Designing and managing: researchers coming to the Stroke family group to get
patients’ feedback on their projects, i.e. the stroke services re-configuration study.
Drafting plain English summaries.
• Undertaking: Patient-researcher carrying out semi-structured interviews with
patients, using interview guides
Examples

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
• Disseminating: co-authoring and presenting posters
at conferences; contributing comments on
presentation drafts; co-presenting to academic
audiences.
• Implementing: patients-members of the Stroke group
involved in rolling out of re-configuration at a second
hospital in Manchester.
• Monitoring and evaluating: interviews with
patient/public members and research staff to gather
views on the impact of PPI and what could be done to
improve PPI.
Examples continued

12. “No matter how complicated the research, or how brilliant the
researcher, patients and the public always offer unique,
invaluable insights. Their advice when designing,
implementing and evaluating research invariably makes
studies more effective, more credible and often more cost
effective”.
Professor Dame Sally Davies
Chief Medical Officer for England, and previously
Director General of Research and Development and Chief Scientific Adviser for the
DH and NHS in the United Kingdom
PPI: Why do it?

13. Consultation 2005 New Government Strategy 2006

14. “…a coordinated business plan for
the DH to make a difference in
research by involving people.”

15. Chief Medical Officer (CMO),
Professor Dame Sally Davies',
response to 'Going the Extra
Mile.'
'Having reviewed the report's
recommendations, I am content
that the NIHR commits to
taking them forward…You have
made clear your view that
patients, carers and the public
must remain at the centre of the
NIHR end-to-end research
process to ensure that we
commission research that makes
a difference.’

16. Why do PPI?
o Experiential knowledge:
Patients or carers have knowledge and perspectives that
clinicians and researchers don’t.
o Ethical and moral reasons:
Patients and the public are directly affected by the research
process and findings. They have the right to contribute to it. They
are the tax payers.
o Pragmatic reasons:
‘PPI’ is a requirement for funding bodies.
It can help you with overcoming barriers such as those to
successful recruitment and retention across the population of
interest.
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17. Why are researchers involving patients?
- Some popular motivations
• Funding bodies require it – NIHR, Research for Patient Benefit,
Medical Research Charities.
“It is anticipated that for many …projects, there will be a particularly
significant component of public involvement” – RfPB guidance
notes
• Help with patient-facing documents (patient information sheets,
posters)
• Help with recruitment

18. The NIHR and PPI insight
o The NIHR is plugged into and works closely with INVOLVE
o Use Lay reviewers
o Lay involvement in commissioning the call
o James Lind Alliance and Portfolio work priorities research
o There's PPI in the NIHR structures itself
o PPI managers for the CCF and NETSCC
o Each of the NIHR funding streams:
Research for Patient Benefit (RfPB)
Programme Grants for Applied Research Grants (PGfAR)
Invention for innovation (i4i)
Health Technology Assessment (HTA)
Health Services & Delivery Research (HS&DR)
Efficacy & Mechanisms Evaluation (EME)
Public Health Research (PHR)
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Ask for active
PPI and lay
members help
develop the
PPI guidelines

19. NIHR Research Programmes
and PPI
Weaknesses identified in previous RfPB applications:
• Not enough detail about lay involvement (too general).
• No public involvement in developing the proposal. Most
described future plans for involvement rather than at
development stage.
• Not budgeting adequately (or at all) for PPI.
• The quality of the lay summary. Avoid use of “quotation marks”
for scientific terms

20. NIHR Research Programmes
and PPI
e.g. RfPB
Examples of good practice:
• Involved patients in the early development of the proposal
• Had equal steering group representation for professionals and lay
people
• Involved service users in designing questionnaires and topic guides,
conducting interviews and focus groups, reviewing transcripts and
contributing to interpretation and preparing patient information.
• Arranged for participants to be informed of research findings
• Involved patient groups and charities in disseminating the findings
among patients and service users.

21. NIHR RfPB Guidance

22. Co-Producing Plain English
Summaries (PES)
• The recommended use of plain English is not
new (e.g. the old ‘Lay Summaries’)
• A good quality Plain English Summary is a new
requirement for funding (e.g. NIHR)
• “It is helpful to involve patients/ carers/members
of the public in developing a plain English
summary.” (p.7. RfPB guidance, comp.33)

23. NIHR Plain English Summaries
• The plain English summary is not the same as a scientific
abstract – please do not cut and paste this or other sections
of your application form to create the plain English summary.
• “If we feel that your plain English summary is not clear
and of a good quality then you may be required to amend
your summary prior to final funding approval” (RfPB
Guidance)
• Variation in maximum word/ character counts from NIHR
funders
RfPB = 300 words for PES

24. Top tips
• Use everyday English whenever possible
• Always explain any medical terms you
have to use – lay terms first (medical
word second)
• Use active verbs i.e. ‘we will do it’ rather
than ‘it will be done by us’
• Be concise
• Always check your writing and read it out
loud

25. Top tips
• Bigger words are not always better
• What does the reader need to know?
• In limited text space you may need to
prioritise
• Keep asking the question ‘which
means…….’ until you can not condense it
any more

26. NIHR Guidance: What to include in
PES
Aim(s) of the research • What are you aiming to find out?
• How will patients / carers / members of the public
and services benefit from your research - either
directly or in the longer term?
Background to the
research
• Why does this research need to be done now?
• What is the scale of the issue? For example:
o How many patients / members of the public
are affected?
o What are the costs to services?
Design and methods
used
• What design and methods have you chosen
and why?
• Who are your participants? (if appropriate)
Patient and public
involvement
• How have patients / the public been
involved in developing this research to
date?
• How will patients / the public be involved in
the conduct / management of the research?
Dissemination • Who will the findings be communicated to

27. Reviewing an NIHR Plain
English Summary
• The NIHR plain English summary is
intended for an interested audience,
who are not necessarily specialists
• The summary should be written at
roughly the same level as an article in a
newspaper

28. Reviewing an NIHR Plain
English Summary
1) Did the plain English summary give a clear explanation
of the research?
I. Did it help you carry out your review? If not, why
not?
II. Was the language used appropriate and clear? If
not, where were there problems?
III. Were scientific terms, abbreviations and jargon
explained? If not, which terms need explanation?
1) If this research is funded, the plain English summary
will be published on a variety of websites, without the
rest of this application form. Could this plain English
summary be used on its own to describe the proposed
research? If not, what further information is needed?

29. See
http://www.invo.org.uk/makeitclear/

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Practical planning for effective PPI
Start planning and preparing early on. Consider:
•Why and how you want to involve patients/the public - what will
their perspective add?
•Who do you think is best placed to provide the perspective you
are looking for, and where will you find them?
•What are the needs and expectations of those who will be
involved (e.g. support and training, role description, time
commitment, recognition..)
•What are the practicalities (e.g. means of communication, format
of activities, location and timing of meetings...)
•How will you feedback to them at the end of the project?

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
RDS London - What do we offer?
• Advice on developing appropriate and well-integrated PPI
plans
• Linking research teams with patients/members of the public
• The Enabling Involvement Fund which enables researchers
to involve patients/members of the public in the
development of their application
• Workshops on implementing PPI
• A range of resources and information material
Email: PPI@rdslondon.co.uk
Tel: 020 7848 6226
Website: www.rds-london.nihr.ac.uk/Patient-Public-Involvement.aspx

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Biomedical Research Centre at Guy’s and
St Thomas’ NHS Foundation Trust and King’s College London
Useful links
• www.invo.org.uk
INVOLVE was established in 1996 and is part of, and funded by, the
National Institute for Health Research, to support active public
involvement in NHS, public health and social care research.
• www.peopleinresearch.org
For researchers who want to find members of the public to get involved
in their research
• www.ukctg.nihr.ac.uk
The UK Clinical Trials Gateway helps give people the confidence to join
clinical trials, by providing useful information about how trials work –
while helping link them to researchers running trials they might be
interested in.