On 14th June 2016, the

Cicely Saunders Institute (CSI)

hosted its fifth patient, family and

public involvement workshop. This

workshop was the first run as a

full day event.

The workshop included a packed

programme of presentations and

interactive sessions. Attendees

shared their experiences and

thoughts with researchers on the

overall theme “How to disseminate

our research” in the experience

sharing and skills building

sessions.

The aim of this workshop was to

learn from the impact studies con-

ducted at the CSI had in clinical

practice and how future findings

from ongoing projects can be best dissemi-

nated.

Overall feedback from the event was

positive. The majority of PPI members

felt that the workshop exceeded their

expectations and they were able to con-

tribute meaningfully.

Researchers reported that they

appreciated the opportunity to meet and

discuss with patients, carers and mem-

bers of the public after pitching their

projects in the “Dragons Den” session.

The subsequent discussion session,

which focused on dissemination and

public engagement of projects from the

CSI, was stimulated through examples

in the previous session

The next PPI workshop will be held in

November 2016 and will be informed by

the feedback from this workshop.

Summary of event

The day included a packed pro-

gramme of presentations and discus-

sions throughout.

The morning started with a skills build-

ing session looking at “How to dissemi-

nate our research”. Leading research-

ers Dr. Caroline Jolley, Dr Matthew

Maddocks, and Dr Natasha Lovell, who

researched on new non-medical and

medical interventions for breathlessness

in COPD patients, presented their study

findings and dissemination plan aiming

to demonstrate the impact on clinical

practice after the study was reported.

Marion Sumerfield facilitated an interest-

ing experience sharing session where PPI

members shared their views on where,

how and when best to disseminate the

research findings in order to reach the

community.

New ideas and interests were shared

amongst PPIs and researchers in the

“Dragon’s Den” session when researchers

were pitching their projects for potential

PPI involvement.

The day closed with the launch of our new

virtual forum presented by Sophie Pask

and Lisa Brighton in response to a recom-

mendation emerging from the very first

workshop from PPIs two years ago.

Workshop

attendees:

TEN PATIENTS, CARERS AND

MEMBERS OF THE PUBLIC

TRAVELLED FROM NEAR AND

FAR TO SHAR THEIR

EXPERIENCE.

RESEARCHERS FROM PHD

STUDENT TO SENIOR

RESEARCH FELLOW LEVEL AS

WELL AS PPI LEADS FROM

OTHER ORGANISATIONS

JOINED FOR SESSIONS

THROUGHOUT THE

AFTERNOON.

SUMMARY 1

PROGRAMME 1

FEEDBACK 2

HOW TO DIS-

SEMINATE OUR RESEARCH

3

RECOMMEN-DATIONS

4

Content Page

August 2016 Patient, Family & Public Involvement (PPI) Workshop Summary

C I C E L Y S A U N D E R S I N S T I T U T E

Patient, Family & Public Involvement (PPI)

Thank you to all for your

commitment!

Feedback from patients, family, carers

and members of the public was very

positive overall, with most attendees

saying that the different sessions were

useful, met or even exceeded their ex-

pectations.

The PPI members particularly liked the

“Dragon’s Den” session as it gave them

the opportunity to get up to speed with

the latest research projects and hear

about future opportunities to become

involved with projects presented. For

the first time, researchers from the pre-

vious Dragon’s Den came back to up-

date on the progress. This exceeded

the participants expectations on the

session.

PPI members felt passionate about

composing and disseminate messages

to the public from study results con-

ducted at the CSI.

However, many also felt that all the

sessions were too packed, which hin-

dered the discussion sessions.

Although the workshop was expanded

to a one day event, participants still

felt they had too little time for discus-

sion.

Feedback from researchers who

attended the event was also positive.

Researchers enjoyed hearing from

different views on their proposal from

PPIs and felt comfortable discussing

issues that arose.

Feedback from PPI members

Feedback from researchers

Page 2

Patient, Family & Public Involvement (PPI) Workshop

‘The workshop

gives patients/

carers/ families

the chance of

staying

connected. I

really liked the

fact that it

gives everyone

a chance to

feed back from

experience.’

Dissemination and Public

Engagement session: Useful

Dragon‘s Den: Useful

8 participants

responding

8 participants

responding

Experience sharing session

Presentations on work at the CSI (dissemination) Dissemination and Public Engagement Session

Dragon’s Den Experience Sharing session

The dissemination and Public Engagement

session was facilitated by Marion Sumer-

field, who has been a member of the CSI

PPI group since 2014. Building on from

the previous session, where participants

heard about direct impact in clinical

practice from studies conducted at the

CSI, Marion asked the group what,

where, why and how we could improve

the dissemination at the institute.

During the warming up phase of the ses-

sion, participants were asked what other

research from the CSI PPI members were

aware of. Those on social media were

best informed, and they highlighted the

value of releasing a blog post after a

scientific publication.

It was interesting to discuss the following

question, which was about where to ex-

pect to find the information. A clear mes-

sage of the need to find it in the local

community through advertisement and

dissemination i.e. in GP practices, schools,

supermarkets, mother and baby clubs as

well as lunch clubs, just to mention a few

of the public hotspots, came out to play a

major part in the dissemination strategy.

Others said that many white papers are

just lying there, but should instead be

turned into a patient, carer or staff leaf-

let to read in those hotspots.

A passionate discussion emerged when

the participants were asked why dissemi-

nation of study findings was needed. This

questions had direct links with previous

workshops where participants stated how

important it is for the CSI to educate the

public about palliative care and that

there are solutions for people in need.

The last question for this session was how the knowledge of such infor-mation would help everyone. Partici-pants raised that it is a helpful cop-ing strategy when you know that something will be available in the future for people living with a partic-ular condition. However, the infor-mation should be collated in a short, clear, readable and easy to under-stand format. The participants said a good way of reaching a broad spec-trum of the public with that sort of information would be for leaders like politicians, the government, or celeb-rities to campaign and talk about the great research produced and con-

ducted at the CSI.

After a lively discussion, everyone was certain and clear of how to bet-ter spread the messages from re-

search.

This session will inform and update the current dissemination guidelines in the institute. Thanks to Marion for

such a great session.

Dissemination and Public Engagement session summary

Page 3

Patient, Family & Public Involvement (PPI) Workshop

“You matter because you are you, and you matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but to live until you die.” Dame Cicely Saunders

WAYS FORWARD:

PLAN SHORT MEETINGS

WITH CLINICAL TEAMS

TO UPDATE ON LATEST

RESEARCH

TO BE PRESENT AT

PUBLIC EVENTS OR

PUBLIC INSITUTIONS I.E.

SCHOOLS, GP,

HOTSPOTS, ETC.

THINKING ABOUT

DISSEMINATION OF THE

FINDINGS NEEDS TO

ALREADY TAKE PLACE IN

THE PLANNING PHASE

OF THE STUDY

‚It is good to know that

there will be something

available in the future as

an important coping

mechanism for the

people living with a

particular condition‘ One participant‘s responce to the

question why dissemination of study

findings is important

dissemination algorithm and guideline

being updated at the institute.

PPI members wished there would be

more participants but appreciated

hearing from other PPI groups, as

well as leaders of external groups

who attended the session.

Thank you all for your contributions

and for taking the time to make the

day a success.

The feedback from the day was posi-

tive, with participants commenting that

they appreciated having more time for

discussion and questions. PPI members

enjoyed hearing from the topic of

breathlessness and were impressed

with the impact on clinical practice

through such research. Feedback from

previous workshops have consistently

requested presentations on non-cancer

symptoms and diagnoses, and PPI

members appreciated the topic choice

as breathlessness is a symptom affect-

ing many palliative care patients.

Important contributions from the group

during the discussion session led to the

Conclusion and Recommendations for future events

Cicely Saunders Institute

Bessemer Road

Denmark Hill

SE5 9PJ

PPI working group:

Susanne de Wolf-Linder

Sophie Pask

Lisa Brighton

Louise Coulson

Ping Guo

Phone: 020 7848 5520

E-mail: csi.ppi@kcl.ac.uk

Visit us on the web:

www.kcl.ac.uk/palliative

The Cicely Saunders Institute is the first purpose built institute for research into

palliative care and rehabilitation. We offer palliative care courses and other

resources relevant to palliative care and rehabilitation.

Palliative care is the active total care of patients whose disease is not responsive

to curative treatment. The goal is the best possible quality of life for patients and

their families, and includes control of pain and other symptoms, as well as

attention to psychological, social and spiritual problems.

The Institute brings together academics, healthcare professionals, community

organisations, patients and carers in one centre and acts as the hub for a

network of international research. It offers high quality palliative care solutions

to patients, as well as providing education, patient information and support.

The Cicely Saunders Institute opened in 2010 as the first purpose built institute for re-search into palliative care

K I N G ’ S C O L L E G E L O N D O N

Page 4

THANK YOU VERY MUCH FOR

YOUR VALUABLE

CONTRIBUTION