Appendix I [Patient Representative Feedback]
PVCR/NCRI (UK) Dragons’ Den Summary Report.
PVCR/NCRI (UK) Dragons’ Den Tuesday, 25th February 2020 Galway Bay Hotel.
Gender distribution of respondents.
Male
|
Female
|
Not stated
|
Total
|
---|
15
|
23
|
15
|
53
|
28.3%
|
43.4%
|
28.3%
|
100%
|
Question 1. How did you hear about the DD?
How
|
How many times?
|
---|
Word of mouth
|
10
|
No response
|
8
|
Online/social media
|
7
|
Advocate/support group
|
6
|
PVCR
|
5
|
TV/Nationwide
|
4
|
IACR
|
3
|
NUIG
|
3
|
Email
|
3
|
Healthcare professionals
|
2
|
HRB
|
2
|
‘Science on Screen’
|
1
|
-
Note:
In some cases, participants reported more than one method of hearing about the event and all have been recorded separately
Question 2. Indicate your Dragons Den table.
Table
|
No. feedback forms received
|
---|
1
|
7
|
2
|
5
|
3
|
6
|
4
|
4
|
5
|
3
|
6
|
6
|
7
|
8
|
8
|
6
|
9
|
4
|
10
|
4
|
Question 3. 1. I was clear about what the DD session was before the event.
Preference
|
No.
|
%
|
---|
Strongly agree
|
18
|
34.1
|
Agree
|
24
|
45.3
|
Neither agree/disagree
|
5
|
9.4
|
Disagree
|
4
|
7.5
|
Strongly disagree
|
2
|
3.7
|
-
Note:
In one case, the participant responded to all questions with ‘strongly disagree’ but all associated feedback was very positive. It has been recorded as indicated by the participant in Q3.2, 3.3, 3.4 and Q5.1, 5.2
Question 3. 2. The venue for the DD was suitable.
Preference
|
No.
|
%
|
---|
Strongly agree
|
35
|
67.3
|
Agree
|
14
|
27
|
Neither agree/disagree
|
1
|
1.9
|
Disagree
|
1
|
1.9
|
Strongly disagree
|
1
|
1.9
|
No answer
|
1
|
0
|
Question 3. 3. The number of friendly dragons at my table was suitable.
Preference
|
No.
|
%
|
---|
Strongly agree
|
32
|
61.5
|
Agree
|
17
|
32.7
|
Neither agree/disagree
|
0
|
0
|
Disagree
|
1
|
1.9
|
Strongly disagree
|
2
|
3.8
|
No answer
|
1
|
0
|
Question 3. 4. The session length was suitable.
Preference
|
No.
|
%
|
---|
Strongly agree
|
19
|
36.5
|
Agree
|
22
|
42.3
|
Neither agree/disagree
|
3
|
5.7
|
Disagree
|
7
|
13.5
|
Strongly disagree
|
1
|
1.9
|
No answer
|
1
|
0
|
Question 3. 5. I knew who to contact if I had questions about the DD.
Preference
|
No.
|
%
|
---|
Strongly agree
|
30
|
56.7
|
Agree
|
20
|
37.7
|
Neither agree/disagree
|
2
|
3.7
|
Disagree
|
1
|
1.8
|
Strongly disagree
|
0
|
0
|
No answer
|
0
|
0
|
Q4. Additional comments/suggestions- synopsis of recurring themes.
Perhaps too many at table
|
Communication pre-event was great. A very wide range of voices. Real commitment to patient voice
|
More advertising where you host meetings coming up to event eg. local papers, hospitals, cafes
|
Would like to get more information on the other tables
|
May be an idea not to have tables but chairs around flip chart as difficult to hear with number of groups in room. Without the table, we would be nearer to the researcher
|
More time would have been useful. It takes some time to get into the subject and warm up
|
Would love follow up from research team
|
Its good to meet other people living with cancer. Set up and venue excellent
|
I love Amanda’s little bit of wit
|
Thank you for organising this wonderful event. Amazingly beneficial to all of us out here!
|
Exceptional organisation and facilitation. There was a great tone set for the whole night
|
Keep up the good work. During my journey I said ‘I don’t want sympathy, I want positivity’
|
Such a lovely atmosphere in the room and the whole set up was excellent - makes it easy and comfortable to talk about cancer
|
Question 5. 1. Your comments were listened to and taken on board.
Preference
|
No.
|
%
|
---|
Strongly agree
|
31
|
65
|
Agree
|
15
|
31
|
Neither agree/disagree
|
1
|
2
|
Disagree
|
0
|
0
|
Strongly disagree
|
1
|
2
|
No answer
|
5
|
0
|
Question 5. 2. The feedback your group provided will make a positive difference to the project.
Preference
|
No.
|
%
|
---|
Strongly agree
|
32
|
63
|
Agree
|
17
|
33
|
Neither agree/disagree
|
1
|
2
|
Disagree
|
0
|
0
|
Strongly disagree
|
1
|
2
|
No answer
|
2
|
0
|
Question 6. Did DD meet your expectations?
Yes
|
No
|
No answer
|
%
|
---|
17
|
0
|
6
|
100
|
-
Note:
Only 17 participants answered this question directly
Question 7. Did you feel there was enough opportunity for questions and discussions?
Yes
|
No
|
No answer
|
% yes
|
% No
|
---|
27
|
21
|
5
|
56
|
44
|
Question 8. Suggestions to improve DD – synopsis of key suggestions.
Have a really simple overview of the project questions as not everyone pre reads info
|
More information in advance
|
More time
|
Specific protected time at start of session to give an overview of research to dragons
|
Give more time for discussion
|
More time and no tables, just chairs around a flipchart to hear better
|
Perhaps a meet and greet with the researcher where they can present their study/research in a more formal way before the discussion (separation of the two parts slightly)
|
To be able to give input to the other topics - maybe a questionnaire emailed. Ask which topics people would like input on and email them a questionnaire
|
Not sure how this could happen due to layout and different tables all talking at once but if one could hear better what is being said during discussions
|
Question 9. Selection of best quotes summing up the experience (subjective!)
Fantastic opportunity to positively influence researchers’ ideas and thinking
|
Good atmosphere promising positive change
|
So nice to have my voice heard
|
If my contribution can help one person, I am happy.
|
An insightful, eye opening and thought-provoking evening
|
A great platform for patients to feel their voice matters. These inputs and experiences will hugely benefit other sufferers
|
Very relaxed and informal. I enjoyed meeting other people
|
Empowering and creative opportunity for patient involvement
|
Excellent opportunity to interact with like-minded people
|
Regardless of your association with cancer, everyone has something to offer
|
Excellent day - empowering patients, clinicians and researchers
|
A step forward in democratising patient care
|
It was a brilliant event. It felt very empowering to be part of the discussion and have a voice
|
Progressive, informative and providing patients with a chance to participate in the future of cancer research
|
An invaluable discussion with open minded people from a diverse background. Excellent fun!
|
Appendix II
Patient Voice in Cancer Research (PVCR) Steering Committee.
Terms of Reference.
1. Mission
The Patient Voice in Cancer Research (PVCR) Steering Committee is responsible for an initiative to actively engage cancer patients, cancer researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in cancer research) in discussions and decision-making processes, which positively impact on cancer research and outcomes for patients.
2. Functions
2. The PVCR steering committee, will
-
Build connections between patients and cancer researchers.
-
Facilitate a two-way dialogue between patients and cancer researchers.
-
Provide education and training for patients and cancer researchers to:
-
(i) Improve communication between both parties ensuring that cancer research is seen as a joint venture to overcome the disease and improve quality of life and overall survivorship during and post treatment.
-
(ii) To improve the understanding of cancer research in a concise and clear message to the wider community.
-
Inform policy-makers and healthcare professionals of research needs that will benefit cancer patients.
-
Provide greater clarity to patients on the capture, collection, management and use of data in cancer research.
2.2 The PVCR steering committee may form such and as many sub-committees as it deems necessary to perform its functions, and may delegate any of its functions to a sub-committee. This list is not exhaustive but initially includes: communications, information governance, community network and training sub-committees
3. Composition
At a minimum, the PVCR Steering Committee will include:
▪ 6 patients (balance with respect to gender, age, socio-economic background and cancer type)
▪ 1 patient advocate group representative
▪ 1 representative from each registered charity
▪ 1 social science allied health professional (nursing, clinician, psycho-oncologist)
▪ 2 research active academics
▪ 2 early career researchers (up to seven years out of their PhD, as per ERC guidelines)
4. Membership
4.1 The Steering Committee will consist of a minimum of 15 and a maximum of 25 core members, with a quorum of 13.
4.2 Membership will be for 2 years in order to allow adjustments as required.
4. 3 Members are free to withdraw from the Steering Committee at any time by contacting the Chair.
4. 4 The Chair will be appointed by the Steering Committee for a 3-year period, after which time a new Chair or a second term of office will be discussed.
4. 5 People with specific expertise or specialised knowledge can be invited to PVCR meetings on request through or by the Chair.
4. 6 New members can be nominated by Steering Committee members, and must complete an application form which is available by emailing patientvoicecancer@ucd.ie
5. Meetings
5.1 Steering Committee meetings will be held 3–4 times a year, usually in advance of PVCR events to facilitate planning.
5.2 The Steering Committee will be provided with a meeting agenda and supporting papers in good time before the meeting. To avoid unnecessary burden, the paperwork will be concise.
5.3 Detailed minutes and actions arising will be circulated to the Steering Committee following meeting.
5.4 Steering Committee members who are patients will be reimbursed for travel and reasonable expenses to attend PVCR meetings in accordance with the guidance from UCD Bursar’s Office and the PPI Ignite team. As a public sector body, expenses claimed are subject to public scrutiny by the Comptroller & Auditor General and through Freedom of Information requests. It is important that all expense claims submitted should be exemplary in terms of compliance with procedures, accurate, easy to review and clearly justifiable. The relevant forms are available by emailing patientvoicecancer@ucd.ie
5. 5It is anticipated that PVCR members representing external agencies will claim reimbursement for travel expenses from their employer.
6. Reporting
The Steering Committee will report to funders, as per the terms and conditions of any grant received.
7. Partners
7.1 University College Dublin (UCD) provides support to the PVCR in its initial stages.7.2 Fudge Creative provides support in terms of branding and identity.7.3 The Irish Cancer Society approved a grant of €30,000 for one year of operation (May 2019–May 2020), to be reviewed on completion.7.4 The Mater Foundation has provided a grant of €20,000 for PVCR events 2018–2020.
Appendix III
GRIPP2 SHORT FORM.
Staniszewska, S., Brett, J., Simera, I. et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem 3, 13 (2017). https://doi.org/10.1186/s40900-017-0062-2
-
1.
Aim (Report the aim of PPI in the study):-
To encourage and enable people affected by cancer and their families to become involved in shaping and informing the future of cancer research across the island of Ireland. Its aim is to identify the questions and needs that matter most to (i) people living with a cancer diagnosis, and (ii) those most likely to improve the relevance of cancer research.
-
2.
Methods (Provide a clear description of the methods used for PPI in the study):-
This is an exploratory reflective single case study of the establishment of the Patient Voice in Cancer Research (PVCR) initiative within the UCD Conway Institute over four years (2016–2020). Our focus is on sharing the PVCR journey and a case study approach allowed us to share our experience within our context “without control over actual behavioural events by the investigator”.
-
3.
Study Results (Outcomes:- Report the results of PPI in the study, including the positive and negative outcomes):-
Positive.
- UCD Conway has established a PPI programme and given visibility of our research programmes to the public that is branded and trusted.
- Biannual workshop events (n = 8) themed according to patient interest have been successfully hosted pre-Covid-19. During the COVID-19 pandemic, the DD events have successfully moved to the virtual environment.
-Specifically in relation to the PVCR Dragons Den (DD) events, these have involved circa 150 “experts” and to date 15 cancer researchers, in focused discussions on what researchers need expert advice on and insight on. Feedback (3 month and 6 month) from researchers who have requested and hosted these DD events, have been most positive of the impact these unique discussions have had, on the way they have re-thought certain aspects of their original research plan, and howthey have incorporated new ideas from the experts. Importantly, in some cases, these unique contacts have become team members in co-designing cancer research projects moving forward. The specific outcomes of the feedback collected is currently in preparation for a subsequent publication.
-Our Governance and Terms of Reference were co-designed with our “Experts by Experience”.
-Through PVCR we have established training for investigators in PPI, and routinely deliver communication workshops where patients and researchers team up to deliver plain English Abstracts.
-PVCR has worked with organisations for example the National Cancer Registry of Ireland (NCRI), the National Biobanking Working Group (NBWG), and the National Cancer Research Institute (NCRI) UK, to bring the voices of patients to discussions and decision-making processes relevant to cancer research.
-Feedback to attendees for all events is crucial and indeed critical.
Negative.
-At one of our events, one of attendees unexpectedly, became quite distressed. Since that time our events have professional psychological support available as required. In face to face events this is the identification of a room where a private discussion can be had and if online a bespoke breakout room for a private consultation.
-
4.
Discussion and conclusions (Outcomes-Comment on the extent to which PPI influenced the study overall. Describe positive and negative effects.
-There are positive impacts to holding virtual PVCR events, as it negates the issue of travel, finding the location of the event and indeed logistics of parking. Moving forward, blended /hybrid approaches will be considered in PVCR events.
-Ensure an ongoing feedback loop. Feedback enables all contributors to know how much their unique input was valued, listened to and taken on board.
-
5.
Reflections/critical perspective (Comment critically on the study reflecting on the things that went well and those that did not so others can learn from the experience)
Things that went well:-.
The patient Voice in Cancer Research (PVCR) is a recognisable and trusted brand for patients to feel this initiative as inclusive of all voices of “experts with experience” in a trusted and collaborative environment. Patients who have engaged with PVCR events frequently join us for a range of other events we host and indeed many of our new members across the island of Ireland have been encouraged to sign up for PVCR circulars and newsletters and indeed events based on “word of mouth”.
In relation to the DD events specifically, researchers have benefitted from these DD events from the perspective of learning the critical importance of including patients in their cancer research endeavours moving forward, which by its very nature needs such a multi-disciplinary team approach for cancer research to make a continued difference for patients with this diagnosis. For some researchers, partnerships from these DD events have resulted in collaborations and joint research applications co-designed by researcher and patient.
For patients, from feedback we have been given, that sense of contributing and helping researchers with their research questions has been most empowering. The fact that researcher reports are circulated back to the DD attendees has been very well received as patients have a tangible sense of how their contribution has made a difference. There is also a key sociable aspect to these DD events which particularly during COVID-19 has been very important.
Things that did not go so well and which have now been improved:-
-
1.
Our start time and end time for any of the PVCR events is now tailored to times that are easier for patients to attend, particularly if travelling long distances (Pre = COVID-19).
-
2.
Initial events lacked structures feedback to attendees in relation to their unique contribution to the discussions in hand. Feedback is now integral and crucial to every event we host.
-
3.
A quiet room, a space to move away and a person to talk to are now available at all of our events should an attendee become unwell or distressed.