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Dr Veronica Swallow, School of Healthcare, University of Leeds
Mr Simon Stones, Patient/Researcher,
Dr Rabiya Majeed, Teaching Assistant/Research Fellow, University of Manchester
Sigma Theta Tau: Phi Mu Chapter Biannual Conference
Conference, University of Leeds, 19th June 2015
}To outline current policy approaches to
public empowerment in health-care research
}To illustrate one example of a collaborative
nursing/psychological researcher/ health-
care professional/patient research
partnership
}Public involvement in research
is a changing and evolving
environment.
}We use a combination of
approaches
1. Respect
2. Support
3. Transparency
4. Responsiveness
5. Diversity
6. Accountability.
INVOLVE the UK National Institute of Health
Research advisory group for patient and public
involvement
}
Involvement
Actively involved in research projects and
research organisations
}
Participation
Where people are recruited as research
subjects or participants
}
Engagement
Where information about research is provided
or disseminated
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 efficient as well.
Professor Dame Sally Davies, Chief Medical
Officer
}Democratic principles
}Research quality and relevance
}Making the research more relevant
As healthcare professionals we mustn’t assume
we know more than anyone else….recognise
that other people are experts and accept that
other people have skills that will make your
project work.
INVOLVE Briefing Note 3
}Policy drivers – Going the extra mile
“…the NIHR must continue to work in partnership
with the public in delivering high quality research…
research without evidence of public involvement
would be considered flawed, the openness and
transparency with which it is conducted, vital to
maintaining public confidence in research, and their
belief in its ability to improve their health and that
of their neighbour….” (p 9)
Simon Denegri, National Director for Patients and
the Public Research, & Chair of INVOLVE
}Opportunities to engage and become involved in
research are visible
}The experience of patients, service users and
carers is a fundamental and valued source of
knowledge
}Public involvement is a required part of high
quality research
}Public involvement is locally driven and relevant
}Evidence of what works is accessible
}The NIHR maintaining its global presence and
influence
}http://www.arthritisresearchuk.org/arthritis-
information/your-stories/juvenile-
idiopathic-arthritis/simon-stones.aspx
11
Translating*an*idea*into*reality
That*seems*easy*enough?
12
Quality*research*takes*time…
It*is*important*to*develop*effective)interventions*
with*an*evidence-base
13
Our*journey*on*the*MobAPP*project
BSPAR:*British*Society*for*Paediatric*and*Adolescent*Rheumatology;*
EULAR:*European*League*Against*Rheumatism
REPORT EVIDENCE
Systematic*review*protocol*and*
publication,*grant*applications*and*
dissemination
•Publication of systematic
review publication in Journal
of Medical Internet Research
•Contribution to systematic
review, to be published
•Applications for further funding
opportunities
•Presentation at EULAR, Nursing
Conference and BSPAR
IDENTIFY EVIDENCE
Appointed*researcher,*held*first*
meeting*&*INVOLVE*conference
•Appointed Rabiya Majeed to
conduct systematic review
•Held two face-to-face
meetings
•Secure further funding from
The University of Manchester
•Presented at INVOLVE 2014
LAUNCH OF MOBAPP
Preliminary*survey,*established*team*
&*identified*funding
•Launch*of*a*preliminary*survey*via*
charity*networks
•Establish*a*multidisciplinary*team,*
lead*by*Veronica*Swallow
•Secure*first*funding*grant,*from*The*
University*of*Manchester
2013 2014 2015
A lot has been achieved in a relatively short period of time, but
there is still lots more to do!
14
We*established*a*Manchester-based*interdisciplinary*team*of*co-
researchers*on*the*MobAPP*project*
LTC:*Long-Term*Condition
•Young*person*with*multiple*LTCs
•Parent*of*child*with*a*LTC
•Researchers
•Paediatric*Rheumatologists
•Adolescent*Rheumatologist
•Nurses
•Academic*staff
A unique research team,
contributing as equal members
15
A*patient-and*parent-led*survey*provided*key*insights*to*secure*the*
first*funding*opportunity*to*begin*the*project*
LTC:*Long-Term*Condition
Children)and)young)people)felt)there)was)a)need)for)a)mobile)application)to)
be)developed,*for*and*with*young*people*affected*by*a*LTC*in*collaboration*
with*healthcare*professionals
Children)and)young)people)identified)some)essential)elements)that)
should)feature)within)the)mobile)application,*including*treatment*
reminders,*fun*facts,*physio*regimes*and*a*‘diary’*styled*option*to*record*
pain,*fatigue*and*other*symptoms*
Most)children)and)young)people)said)that)they)would)use)the)app)at)either)
home)or)the)hospital.*The*survey*suggests*that*young*people*would*be*less*
likely*to*use*the*app*whilst*at*school*or*with*friends
16
We*shared*the*thoughts*of*young*people*at*the*INVOLVE*Conference*for*
patients*and*the*public*in*November*2014**
INVOLVE*is*funded*by*the*National*Institute*for*Health*Research*in*the*United*Kingdom
“The*app*would*be*good*because*I*don’t*
like*asking*people*for*advice,*I*like*to*look*
for*it*myself”
“Make*sure*it
is*not*
overloaded*
with*writing”
“The*app*needs*to*be*password*protected*
and*secure*for*me*to*use*it”
“It*should*look*
nice*and*not*be*a*
chore*to*use*on*a*
daily*basis”
17
The*systematic*review*will*report*the*effectiveness*of*mobile*applications*in*
young*people*with*physical*long-term*conditions
Majeed-Ariss R.*et#al.*Mobile*Phone*and*Tablet*Apps*to*Support*Young*People’s*Management*of*Their*Physical*Long-Term*Conditio ns:*A*
Systematic*Review*Protocol.*JMIR#Res#Protoc 2015;*4(2):e40
§Health*care*advancements*mean*young*people*living*with*long-term*physical*conditions*have*improved)survival)rates
§However,*they*have*distinct)health)needs)as)they)transition)into)adulthood)for*which*regular*and*appropriate*support*is*paramount
§While*there*is*evidence*suggesting*that*interventions*in*the*form*of*mobile*phone*and*tablet*apps*have*great*potential*and*
reasonable*uptake,*to*our*knowledge,*there)has)not)been)a)synthesis)of)studies)reporting)on)their)effectiveness in*the*management*
of*physical*long-term*health*conditions*in*young*people
RATIONALE
§A*particular*strength*of*this*review*is*that*it*
aims*to:
§Identify*what*interventions)exist)for)
a)variety)of)long-term)conditions
(as*opposed*to*condition*specific*
reviews,*for*example*in*asthma;
§Identify*which*interventions*are*
effective
§Identify*what*level)of)user)
involvement)they*were*developed*
and*evaluated
AIMS*AND*STRENGTHS
§In*addition*to*disseminating*findings*in*a*stand-alone*review,*they*will*be*used*as*
discussion)aids)in)future)qualitative)studies
§We*will*adapt*the*design*and*methodology*of*previous*work*(where*members*of*
the*current*team*developed*and*evaluated*an*interactive*Web*app*to*support*
parents’*home-based*management*of*their*childrens’*long-term*conditions)*to*
develop)an)evidence-based)app that*is*effective*in*meeting*the*needs*and*
preferences*of*young*people*with*JIA
§By*working*in*collaboration*with*consumer*representatives*this*app*could*
potentially*act*as*a*template,)applicable)to)other)conditions
§We*anticipate*our*findings*will*have*demonstrable*benefit*internationally for*
young*people*living*with*physical*long-term*conditions
LOOKING*TO*THE*FUTURE
18
The*next*steps
RfPB:*Research*for*Patient*Benefit;*UK:*United*Kingdom
Complete)detailed)review)to*identify*the*existing*evidence*and*examine*existing*
mobile*applications
Supplement*theoretical*understanding*by*conducting*focus)groups)with*children*
and*young*people
Grant)application)to*the*National*Institute*for*Health*Research,*Research*for*
Patient*Benefit*(RfPB)*fund*in*the*UK
Design)content)and)delivery)of)the)app)and*decide*how*to*assess*effectiveness
An*award*for*Simon
https://www.youtube.com/watch?v=KVhssJIp-
w8
Nurses*and*patients*can*be*co-
researchers!
SupportRespect
Responsiveness,* Trans parency
Accountability
Diversity
References
MAJEED-ARISS, R., HALL, A. G., MCDONAGH, J., FALLON, D. & SWALLOW, V. 2015.Mobile Phone
and Table t Apps to Support You ng People’s Management of Their Physical Long-Ter m Conditions:
ASystematic Review Protocol.JMIR Res Protoc,4,e40.
NIHR (2015)Going the Extra Mile astrategic review of public involvement in the National
Institute for Health Research.National Institute of Health Research, London
