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Nurses and patients as co-researchers: dream or reality?

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Aims/Objectives To outline current policy approaches to public empowerment in health-care research To illustrate one example of a collaborative health-care professional/patient partnership in a research project Background INVOLVE, the UK National Institute of Health Research advisory group for patient and public involvement, identified six values for good practice in public involvement in research: respect, support, transparency, responsiveness, diversity and accountability. Although young people are frequent users of mobile devices in day-to-day life, little is known about their needs and preferences for apps that support their personal health care or whether young people with long-term conditions (LTCs) have been involved in their development. Therefore, this area of research is ripe for development. This paper describes and discusses the way INVOLVE values have informed a national interdisciplinary research programme on mobile technologies for young people with LTCs to help promote optimum disease management. Methods The study used a phased approach recommended by the Medical Research Council framework for development and evaluation of complex interventions. Patient and parent involvement was implicit from the outset. A patient/parent led survey of the views of young people with arthritis on the need for an app, combined with an international systematic review (involving a patient as a co-researcher and co-author) of the effectiveness of mobile phone and tablet apps that support young people’s management of their chronic conditions, was the first step in our phased approach to app development. Findings and discussion The survey confirmed a need for an evidence-based mobile app for young people with arthritis, the systematic review identified only four studies of variable quality, one of which had meaningful patient involvement. Involving patients as co-researchers needs to shift from dream to reality if we are to address patients’ needs and preferences in the rigorous development and testing of interventions such as apps to support their personal health-care.
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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
... The young person and academic researcher also copresented findings from the study, and the partnership between CYP and researchers at a local Children's Hospital Conference. 48 Dissemination also extended beyond traditional publication strategies, and included the preparation of blog posts and social media announcements about the findings of the study and next steps in the research pathway. ...
Article
Third in a series of four articles addressing ethical approaches and issues in undertaking clinical research with children and young people.
Article
Full-text available
Background: The prevalence of long-term or chronic conditions that limit activity and reduce quality of life in young people aged 10-24 years is rising. This group has distinct health care needs and requires tailored support strategies to facilitate increasing personal responsibility for the management of their condition wherever possible, as they mature. Mobile phone and tablet mobile technologies featuring software program apps are already well used by young people for social networking or gaming. They have also been utilized in health care to support personal condition management, using condition-specific and patient-tailored software. Such apps have much potential, and there is an emerging body of literature on their use in a health context making this review timely. Objective: The objective of this paper is to develop a systematic review protocol focused on identifying and assessing the effectiveness of mobile phone and tablet apps that support young people's management of their chronic conditions. Methods: The search strategy will include a combination of standardized indexed search terms and free-text terms related to the key concepts of young people; long-term conditions and mobile technology. Peer-reviewed journal articles published from 2003 that meet the inclusion and exclusion criteria will be identified through searching the generated hits from 5 bibliographical databases. Two independent reviewers will screen the titles and abstracts to determine which articles focus on testing interventions identified as a mobile phone or tablet apps, and that have been designed and delivered to support the management of long-term conditions in young people aged 10-24 years. Data extraction and quality assessment tools will be used to facilitate consistent analysis and synthesis. It is anticipated that several studies will meet the selection criteria but that these are likely to be heterogeneous in terms of study design, reported outcomes, follow-up times, participants' age, and health condition. Subgroup analyses will be undertaken and where possible meta-analyses will take place. Results: This review will synthesize available knowledge surrounding tablet and mobile phone apps that support management of long term physical health conditions in young people. The findings will be synthesized to determine which elements of the technologies were most effective for this population. Conclusions: This systematic review aims to synthesize existing literature in order to generate findings that will facilitate the development of an app intervention. The review will form the first phase of development and evaluation of a complex intervention JMIR Res Protoc 2015 | vol. 4 | iss. 2 | e40 | p.1 http://www.researchprotocols.org/2015/2/e40/ (page number not for citation purposes) Majeed-Ariss et al JMIR RESEARCH PROTOCOLS XSL • FO RenderX as recommended by the United Kingdom Medical Research Council. The knowledge gained from the review will be verified in subsequent phases, which will include primary qualitative work with health professionals and young people with long term conditions as research participants. Young people living with long-term conditions will be involved as co-researchers and consumer advisors in all subsequent phases to develop and evaluate an app to support the management of long-term physical health conditions. Trial Registration: PROSPERO International prospective register of systematic reviews: CRD42014015418; http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42014015418#.VRqCpTpnL8E
Going the Extra Mile a strategic review of public involvement in the National Institute for Health Research
  • Nihr
NIHR (2015) Going the Extra Mile a strategic review of public involvement in the National Institute for Health Research. National Institute of Health Research, London