This presentation was delivered during the 'Participation in healthcare settings' session of the 6th Children's Research Network for Ireland and Northern Ireland Conference.
In the driving seat: Health care and research led for, and by young peopleSimon R. Stones
This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
This presentation was delivered as part of a seminar to the Child Health Evaluative Sciences (CHES) Research Group, based at The Hospital for Sick Children (SickKids) in Toronto, ON, Canada. The presentation focused on the importance and some of the practicalities of involving young people in research.
Patient and public involvement in research: Two sides of the same coinSimon R. Stones
This talk, about patient and public involvement in research, was delivered at the inaugural co-developed conference at University College Dublin, titled 'A collaborative approach to arthritis and rheumatic disease research'.
In the driving seat: Health care and research led for, and by young peopleSimon R. Stones
This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
This presentation was delivered as part of a seminar to the Child Health Evaluative Sciences (CHES) Research Group, based at The Hospital for Sick Children (SickKids) in Toronto, ON, Canada. The presentation focused on the importance and some of the practicalities of involving young people in research.
Patient and public involvement in research: Two sides of the same coinSimon R. Stones
This talk, about patient and public involvement in research, was delivered at the inaugural co-developed conference at University College Dublin, titled 'A collaborative approach to arthritis and rheumatic disease research'.
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This presentation was delivered to the Leeds Children's Hospital Research Forum, where the practicalities of involving and engaging children, young people and families in research was discussed.
Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to s...Simon R. Stones
In this presentation, delivered to the Translate external advisory board at their bi-annual meeting, the importance of patient and public involvement in research is highlighted, as well as simple strategies that researchers, healthcare professionals and private organisations can take to involve people in all aspects of research, from the bench to the bedside.
Paving the way for a brighter future: Opportunities to involve young people ...Simon R. Stones
A presentation delivered at The University of Manchester's Child Health Research Network's workshop on devolution in Greater Manchester. The aim of the overall workshop was to explore the implications and opportunities for child health and wellbeing research in Greater Manchester. Here, I discussed the importance of involving young people and their families in co-designing services and research.
The terms “mainstreaming” and “inclusion” are frequently associated with educational settings or work placements. When we require the care of a health professional, we all are patients and often excluded from the direction of the process of care. The literal meaning of the word "patient" is to be passive. In a world of inclusion, empowerment and self-determination this role needs to change. The presentation discusses the consequences of this paradigm shift for the inclusion of patients in the areas of diagnostics, treatment/interventions and research.
This interactive session will look at the current Higher Education landscape for public engagement and impact, the Research Excellence Framework (REF) and beyond. It will be led by the Faculty impact and public engagement team, helping you see the potential for impact and public engagement opportunities within your own research.
OSFair2017 Workshop | Why is responsible research & innovation important?Open Science Fair
Aliki Giannakopoulou talks about responsoble research and innovation (RRI)
Responsible Research & Innovation (RRI) is a way of researching that takes a long-term perspective on the type of world in which we want to live. It can strengthen research projects by emphasising openness, transparency, diversity, inclusiveness and adaptation to changes. Essentially, RRI aims to create collaborative frameworks in which citizens engage with scientists, entrepreneurs, decisions makers and other groups to work towards sustainable, ethically acceptable and socially desirable outcomes.
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Do you need to create health information for children and young people? Here you'll find some statistics about digital media use in this age group, how to produce high quality patient information, and inspiring case studies. Check out the full Guide to Producing Health Information for Children and Young People, available from the Patient Information Forum at www.pif.org.uk and for more ideas, see my website at www.healthcarewriting.co.uk/portfolio
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The patient and physician interaction in social mediaSimon R. Stones
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This presentation was delivered at NIHR INVOLVE Diversity and Inclusion Working Group meeting on Tuesday 02 April 2019 in London, England, United Kingdom.
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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
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
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Stewardship is the act of taking good care of something.
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WHO launched the Global Antimicrobial Resistance and Use Surveillance System (GLASS) in 2015 to fill knowledge gaps and inform strategies at all levels.
ACCORDING TO apic.org,
Antimicrobial stewardship is a coordinated program that promotes the appropriate use of antimicrobials (including antibiotics), improves patient outcomes, reduces microbial resistance, and decreases the spread of infections caused by multidrug-resistant organisms.
ACCORDING TO pewtrusts.org,
Antibiotic stewardship refers to efforts in doctors’ offices, hospitals, long term care facilities, and other health care settings to ensure that antibiotics are used only when necessary and appropriate
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Antimicrobial stewardship is a systematic approach to educate and support health care professionals to follow evidence-based guidelines for prescribing and administering antimicrobials
In 1996, John McGowan and Dale Gerding first applied the term antimicrobial stewardship, where they suggested a causal association between antimicrobial agent use and resistance. They also focused on the urgency of large-scale controlled trials of antimicrobial-use regulation employing sophisticated epidemiologic methods, molecular typing, and precise resistance mechanism analysis.
Antimicrobial Stewardship(AMS) refers to the optimal selection, dosing, and duration of antimicrobial treatment resulting in the best clinical outcome with minimal side effects to the patients and minimal impact on subsequent resistance.
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VISION
Being proactive
Supporting optimal animal and human health
Exploring ways to reduce overall use of antimicrobials
Using the drugs that prevent and treat disease by killing microscopic organisms in a responsible way
GOAL
to prevent the generation and spread of antimicrobial resistance (AMR). Doing so will preserve the effectiveness of these drugs in animals and humans for years to come.
being to preserve human and animal health and the effectiveness of antimicrobial medications.
to implement a multidisciplinary approach in assembling a stewardship team to include an infectious disease physician, a clinical pharmacist with infectious diseases training, infection preventionist, and a close collaboration with the staff in the clinical microbiology laboratory
to prevent antimicrobial overuse, misuse and abuse.
to minimize the developme
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Breaking barriers, embracing expertise: When patients become people in research
1. Breaking barriers, embracing expertise:
When patients become people in research
6th Children’s Research Network for Ireland and Northern Ireland Conference
2. Hello!
I am Simon Stones
Patient leader.
Advocate for others.
Expert by experience.
Charity representative.
Researcher in training.
@SimonRStones
3. Research is the best,
and most underused
treatment, that exists
in society.
“
6. “
When patients, carers and members of
the public are active partners in
research, rather than the ‘subjects’ or
participants of research.
It is about doing research with or by
patients, carers and the public, not
doing research to patients, carers and
the public.
7. Participation, engagement and involvement
in research must be individualised
◇ Young people are on a journey.
◇ Families are also on a journey.
◇ Thoughts, emotions and experiences change along that journey.
Coming to
terms with
condition(s)Denial
Anger and
frustration
AcceptanceAdapting
Living
life to
the full
8. There are more than 1
million children in the UK
who have a long-term, or
even lifelong illness, and
need medicines for the
foreseeable future.
Life, health and wellbeing
extends beyond the hospital
www.raiise.co.uk
Founded by Sophie Ainsworth
Association of Colleges’ Young Student of the Year 2017
9. Research empowers me,
and others, to take control,
To learn about our conditions
To learn about guidelines
To develop skills and techniques
To find support from peers
To grow in confidence
10. Young people
and their
families
There needs to be
closer collaboration
Patient
organisations
and charities
Health and
education
professionals,
researchers,
industry and
government
Ensuring
scientific and
technical
excellence
Improved understanding of proposals through technical insight
Ensuring relevance
Accountability
Understanding of the real issues
facing patients and carers
11. ◇There are at least 793 children waiting to see
a consultant rheumatologist in Ireland.
◇The national average wait time in 2016 was
169 days.
◇226 children have been on the outpatient
waiting list for more than 18 months.
◇iCAN is a parent-run network providing
support, information and advocating for best
care for those affected by juvenile arthritis.
Organisations are working with young
people and families, day in, day out
Ireland is lacking in care and treatment for children who suffer from arthritis, with
care rated as the 2nd worst in Europe.
www.icanireland.ie
12. Think research at
every opportunity
• Where young people, their families and other
members of the public are actively involved in
research projects and in research organisations.Involvement
• Where information and knowledge
about research is provided and
disseminated to young people, for
example, a science fair or open day.
Engagement
• When young people
and their families take
part in a research study
(formally referred to as
‘subjects’).
Participation
13. When should we involve
young people in research?
Developing ideas
and prioritising
research questions
Designing
research,
applying for
funding and
ethics
Conducting,
analysing and
disseminating
research
Providing and receiving training and development opportunities
14. How can we involve young
people in research?
One-to-one
discussions
Focus groups and
discussion groups
Co-researchers /
research partners
Social media
Advisory and
reference groups
Through existing
groups
15. How can we involve young
people in research?
◇University Research User Groups
◇Research Consortium Stakeholder Groups e.g. IMI
◇NIHR GenerationR and Patient Research Ambassadors (UK)
◇European Young People’s Advisory Group Network (eYPAGnet)
◇International Children’s Advisory Network (iCAN)
◇INVOLVE and People in Research (UK)
◇Children’s Research Network
◇Patient organisations and charities
18. The TRECA study: Trials engagement
in children and adolescents
The NIHR-funded TRECA
study has developed
multimedia information (MMI)
resources with text,
animations, videos and
diagrams to inform children,
adolescents and parents
about clinical trials.
19. The SIRJIA study: Steroid induction
regimens in juvenile idiopathic arthritis
SIRJIA will determine whether
a future study comparing
different steroid treatments is
possible to do with young
people living with juvenile
idiopathic arthritis (JIA).
Young people were involved
in identifying the primary
outcome measure for the
study.
20. Give young
people a chance.
They may just
surprise you.
“
Credits: SlidesCarnival