"Let's talk patients and the public in research": Simon Denegri's talk looked at the key roles of patients, carers and the public in making research of public benefit happen.
Let's talk people in research sept 2014Simon Denegri
This slide-deck covers the main components of current NIHR approaches towards public involvement in research; its ongoing strategic review of the area and; its current policy towards engaging patients through the NHS.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
Involving People: Patients, Participants & Consumers in U.K.Cancer Research (...Nowgen
Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in medicines development – the views of patients and key ...Nowgen
"EUPATI – EU: An overview", held by Bella Starling & Suzanne Parsons (EUPATI / Nowgen) at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Let's talk people in research sept 2014Simon Denegri
This slide-deck covers the main components of current NIHR approaches towards public involvement in research; its ongoing strategic review of the area and; its current policy towards engaging patients through the NHS.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
Involving People: Patients, Participants & Consumers in U.K.Cancer Research (...Nowgen
Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in medicines development – the views of patients and key ...Nowgen
"EUPATI – EU: An overview", held by Bella Starling & Suzanne Parsons (EUPATI / Nowgen) at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Bringing the patient voice into GSK for educational, awareness and patient ce...Nowgen
"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Simon Denegri - Public involvement in CLAHRCsCLAHRC-NDL
Simon Denegri (INVOLVE chair and NIHR National Director for Public Participation and Engagement in Research) keynote presentation at NIHR CLAHRC East Midlands launch event on 14 February 2014, Loughborough.
INVOLVE perspectives on learning and development (Sarah Buckland, INVOLVE)Nowgen
"INVOLVE perspectives on learning and development", presented by Sarah Buckland, INVOLVE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Professor Kamlesh Khunti - Introduction to CLAHRC East MidlandsCLAHRC-NDL
Professor Kamlesh Khunti, Director of NIHR CLAHRC East Midlands - Introductory presentation given at CLAHRC East Midlands launch event, 14 February 2014, Loughborough.
The value off engaging patients in researchSimon Denegri
This is a talk I gave at the Council of Academic Hospitals of Ontario (CAHO) 'Healthier Wealthier, Smarter' conference in Toronto on 1st June 2015. Do visit their new website: http://caho-hospitals.com/
Ensuring research really does involve the young personSimon R. Stones
This presentation was delivered during a session discussing the ethics of conducting research with children and young people. The presentation emphasises the importance of involving children, young people and their families in the design and conduct of research, in order to make it more relevant.
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
This case study by PREPPP Award winner Dr. Anna Chudyk and her team discusses experiences, lessons learned, and barriers and facilitators to engaging in health research scoping reviews.
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
PE101: Introduction to Patient Engagement in Health ResearchCHICommunications
Beginner level introduction to the underlying principles and concepts required for meaningful patient and public engagement.
Following this session, attendees should be able to:
Describe theoretical and practical principles of inclusive, authentic, and meaningful engagement of people with lived experience in health research;
Access resources to improve their knowledge of patient and public engagement practices; and
Participate in intermediate level PE Lunchtime Learning sessions.
This talk was given to the Alberta Cancer Foundation in Calgary, January 2015. It looks at different approaches to public involvement in research funding by UK charities. It also includes some updated slides on the results of the Breaking Boundaries review.
Bringing the patient voice into GSK for educational, awareness and patient ce...Nowgen
"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Simon Denegri - Public involvement in CLAHRCsCLAHRC-NDL
Simon Denegri (INVOLVE chair and NIHR National Director for Public Participation and Engagement in Research) keynote presentation at NIHR CLAHRC East Midlands launch event on 14 February 2014, Loughborough.
INVOLVE perspectives on learning and development (Sarah Buckland, INVOLVE)Nowgen
"INVOLVE perspectives on learning and development", presented by Sarah Buckland, INVOLVE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Professor Kamlesh Khunti - Introduction to CLAHRC East MidlandsCLAHRC-NDL
Professor Kamlesh Khunti, Director of NIHR CLAHRC East Midlands - Introductory presentation given at CLAHRC East Midlands launch event, 14 February 2014, Loughborough.
The value off engaging patients in researchSimon Denegri
This is a talk I gave at the Council of Academic Hospitals of Ontario (CAHO) 'Healthier Wealthier, Smarter' conference in Toronto on 1st June 2015. Do visit their new website: http://caho-hospitals.com/
Ensuring research really does involve the young personSimon R. Stones
This presentation was delivered during a session discussing the ethics of conducting research with children and young people. The presentation emphasises the importance of involving children, young people and their families in the design and conduct of research, in order to make it more relevant.
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
This case study by PREPPP Award winner Dr. Anna Chudyk and her team discusses experiences, lessons learned, and barriers and facilitators to engaging in health research scoping reviews.
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
PE101: Introduction to Patient Engagement in Health ResearchCHICommunications
Beginner level introduction to the underlying principles and concepts required for meaningful patient and public engagement.
Following this session, attendees should be able to:
Describe theoretical and practical principles of inclusive, authentic, and meaningful engagement of people with lived experience in health research;
Access resources to improve their knowledge of patient and public engagement practices; and
Participate in intermediate level PE Lunchtime Learning sessions.
This talk was given to the Alberta Cancer Foundation in Calgary, January 2015. It looks at different approaches to public involvement in research funding by UK charities. It also includes some updated slides on the results of the Breaking Boundaries review.
Isn't this about me? The role of patients and the public in implementing evid...NEQOS
Master Class, led by Professor Richard Thomson- focusing on the role of patients and public in implementing evidence-based healthcare- including shared decision making
Presentation to National Institute for Health Research (NIHR) Public Involvem...Simon Denegri
This presentation includes slides detailing the initial findings from the NIHR Strategic Review of public involvement in research entitled 'Breaking Boundaries.'
Patient Engagement for Data Science, Technology & EngineeringCHICommunications
Learn the necessities and relationship between patient engagement and data science, engineering and technology.
Presented by Trish Roche, CHI's Knowledge Translation Practice Lead, this presentation is geared towards professionals in data science looking to hone their skills in patient engagement.
Presented on Sept. 20, 2023 by Carolyn Shimmin, CHI's Patient and Public Engagement Lead.
This session is meant for beginners. Get familiar with the basics of patient engagement and learn how good engagement can improve your next research project.
iWantGreatCare's 7th National Symposium - Building fantastic staff morale, improving quality and reducing costs - took place on Tuesday 21st June at The King's Fund, London.
NHS leaders share their experiences of how they are building excellence in their Trust, reducing costs and growing staff morale by listening to the voice of the patient.
View the slides from these well-regarded delegates:
Alwen Williams, Chief Exective, Barts Health NHS Trust
David Behan, Chief Executive, Care Quality Commission
Dr Nadeem Moghal, Medical Director, Barking, Havering and Redbridge University Hospitals NHS Trust
Liz Mouland, Chief Nurse, First Community Health and Care
Jeremy Howick, clinical epidemiologist and philosopher
Why Patient Engagement Matters in Data Science, Engineering and TechnologyCHICommunications
This presentation, delivered on February 28, 2024, discusses and defines patient-oriented research as it relates to the fields of data science, engineering and technology.
Participants also learned about CHI's annual Preparing for Research by Engaging Patient and Public Partners (PREPPP) award.
chimb.ca
Academic Health Science Networks supporting strategic commissioningInnovation Agency
Dr Liz Mear, Chief Executive of the Innovation Agency, presented at NHS Confed 17 on Academic Health Science Networks (AHSNs) supporting strategic commissioning and bringing innovators, commissioners, clinicians and patients to together to develop closer collaboration and a demonstrably clearer understanding of NHS needs and opportunities.
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Patient Engagement Presentation - MPN Network Forum April 18, 2017Alexandra Enns
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In April we held a Network Forum on engaging policymakers and patients/public effectively and appropriately. We would like to give a warm thanks to both Carolyn Shimmin, Patient Engagement expert of CHI's Knowledge Translation team, and Marcia Thomson, Assistant Deputy Minister of Manitoba Health, Seniors and Active Living for their presentations. Below you can see Carolyn's presentation - to see more of her work on patient engagement and to learn more about knowledge translation at CHI, please check out the blog Knowledge Nudge here. If you would like more information, helpful tools or advice about patient/public engagement in research, please contact Carolyn Shimmin at cshimmin@exchange.hsc.mb.ca
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Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
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Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
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IMPACTION
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DIARRHEA
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FLATULENCE
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Let's Talk Research Annual Conference - 24th-25th September 2014 (Simon Denegri)
1. Let’s talk patients and the public in research
NHS North West R&D Conference, Wednesday 24th September 2014, Bolton, UK
Simon Denegri, NIHR National Director for Patients and the Public and Chair, INVOLVE (UK)
2. “If I can be part of [the trial] it is a good thing. Without the volunteers they can’t progress this forward.”
Ruth Atkins
NHS employee, mum and Ebola vaccine clinical trial participant
4. UK leadership in public involvement in research
•International leader in public involvement
•Core principle of National Institute for Health Research (NIHR)
•Clear expectation set with research community
•£ Investment and practical
support
•Partnership approach
www.invo.org.uk
7. Increasing effectiveness and efficiency
‘The aim of patient and public involvement
is to improve the quality, feasibility and translational value of research...[This] is the first time
we can see that patient involvement is linked to higher likelihood of reaching recruitment target – and as a result, study success.’
Professor Til Wykes, Director, MHRN
‘Patient involvement in research boosts success,’
The Guardian, 16/09/13
Paper reference: Ennis, L. et al. ‘Impact of patient involvement
in mental health research: longitudinal study’ British Journal of Psychiatry
(Sept 2013) doi: 10.1192/bjp.bp.112.119818
Design
8. Ensuring public confidence
•77% of people said that knowing a Research Ethics Committee had reviewed a study would increase their confidence in it.
•44% of respondents thought that involving patients….would increase their confidence in the study.
Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/patient- involvement-increases-public-confidence-health- research/#sthash.x3fCMNWj.dpuf
12. “I have always taken the view that public involvement in research should be the rule not the exception.”
Professor Dame Sally Davies
Chief Medical Officer (CMO)
13. Breaking Boundaries Review What should public involvement look like in 10 years?
Some clear messages from the community:
•Public involvement is normal and accepted practice
•Enhanced evidence base with better consensus on value of public involvement
•Definitions of quality in public involvement
•Agreed methods and indicators of impact
•Greater public awareness of research and NIHR
•Global leadership in scholarship and the study of public involvement in research
14. “Some people sit in a bath of baked beans or run a marathon. For me, I just thought ‘if not me then who?’ “It’s nice to be part of it and it gives you a way to help.”
Sheridan Edward
Opera singer, Ebola vaccine clinical
trial volunteer on standby!
15. Public appetite
•82 per cent of people believe it is important for the NHS to offer opportunities to take part in healthcare research.
•Less than 7% said they would never take part in a clinical research study.
NIHR Clinical Research Networks Survey May 2012
•Over 70% of patients look for information about clinical trials
ecancer 5 235 2011 ‘Information needs of cancer patients’
Patient experience
•National Cancer Patient Experience Survey 2012 and 2013
–1 in 3 patients had a discussion about research with a health professional
•Discussion much less likely if happening at all for patients with other conditions (i.e. 1 in 5 for type 1 diabetes)
•91% of Trusts do not provide information to support patient choice in research: NIHR CRN CC Mystery Shopper 2013
From willing to active patients
16. IPSOS MORI Poll for Association of Medical Research Charities, 2011
From willing to active patients
17. •Better outcomes for all in health and care
•People choosing to take part in research
•People defining research of the highest quality
•People understanding the evidence on which their care is based
•Improving people’s experience in research
‘Promoting a research active nation’ NIHR Strategic Plan for Participation and Engagement launched on 20 May 2014
18. From willing to active patients
Asking about research
Choosing to take part in research
Knowing their contribution has made a difference
Shaping the way in which research is designed and delivered
Leading change at local and national level to make research happen
Reporting on and sharing their experiences with commissioners and providers
19. •Supporting choice, promoting participation
UK Clinical Trials Gateway (UKCTG), OK to Ask, accessible information, removing barriers to recruitment…
•Learning from patient experience
Measuring access to research, ‘respect and dignity’ agenda, a participant’s charter….
•Supporting citizens to champion and lead research
Research ambassadors,
local partnerships, research active
communities……
‘Promoting a research active nation’
20. ‘OK to Ask’ campaign: International Clinical Trials Day 2014
Ambassadors and champions
•Encouraging patients and carers to ask their clinician about clinical research (and log response/suggestions)
•Encouraging clinicians to consider their response if a patient does ask: how to channel interest
21. Improving the patient experience
Improving patient experience:
•Removing barriers
•Information and consent
•Quality of care
•Relationship with professionals
•When the trial is over – results
and acknowledgement?
22. Cometh the hour, cometh the patient
‘We stand on the cusp of a revolution in the role that patients – and also communities – will play in their own health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not.’
Simon Stevens, NHS CEO, NHS Confederation Annual Conference, June 2014
23. What will it mean to be a patient or member of the public in research in 2025?
‘Invitation only’ or co-production of knowledge?