K

PhD, M

Pr

Sheffield Hall

Sheffield T

k.
•The UK context

•Patient and public involvement – what do we mea•Definitions and models of engagement•Research exemplar•Quality improvement example•Conclusions
` Professorial appointment between 

university and hospital to support research and knowledge translation

◦ University NHS Trust comprising 4 hospitals◦ acute secondary and tertiary services◦ 2,250 beds◦ 5,000 nurses / nursing aides◦ 1 million patient episodes per year

` Implementation lead for NIHR 

Collaboration for Leadership & Applied Health Research and Care (CLAHRC) for South Yorkshire

` Lead programme of knowledge 

translation within CLAHRC focused on implementation of evidence into practice

Sheffie
A dynamic and iterative pro

includes the synthesis, dissemination, exchange anethically sound application oknowledge to improve the hCanadians, provide more effhealth services and products strengthen the healthcare sy

CIHR (Grah
End of grant KT

Integrated KT
Stakeholders or potential research knowledge users eng

research processResearchers and research users work together to shape by collaborating to determine the research questions, demethodology, being involved in data collection and tools interpreting the findings, and disseminating the research Should produce research findings that are more likely be by the end usersAlso known as collaborative research, action-oriented reproduction of knowledge
Publicly funded heath care 

Free at point of delivery of Primary, secondary and terservicesHealth policy directives from government Department of 
•NHS to save £2.3 billion in 2011

•Emphasis on productivity and efficien

spending restrictions

Economic recession

•Increased emphasis on quality outcom•Monitored against achievement of qu•Innovation essential to performance o

Health organisation 

performance

•Evidence-based practice•Quality improvement Policy drivers•Knowledge creation•Knowledge translation Research agenda

•Patient choice and patient experience•Patient and public involvement

Patient / public 

expectations 
People who use health services – pa

potential patientsInformal carers and familiesMembers of the public and commumay be targeted by public health pOrganisations representing the usecare services and community group
Patients

Public

Service users

Community membe

Lay members

An active partnership between the pu

researchers in the research process, use of people as ‘subjects’ of researcInvolves doing research ‘with’ or ‘by’ rather than ‘to’, ‘about’ or ‘for’ the pMay include public involvement in as- the design of a project - advising on a research project- carrying out the research
•Patients / the public are consu

with no sharing of power in thdecision-making

Consultation

•Involves an active ongoing pa

with patient / public members research process

Collaboration

•Patient / public members des

undertake and disseminate thresearch

User control
` Yes

` No

Identifying 

topics

Prioritising 

topics

Com

Manag

resear

Undertaking 

research

Analysing 

results

Interpreting 

results

Writing up 

reports

Disseminating 

results

Evaluating the 

process

Research Process
Patient/public led

The views and experiences of patient / the pthey are not otherwise involved at any stage processPatients/the public are engaged to conduct but take no part in planning and design – e.interviewers but use an interview schedule dresearchersPatients/the public act as advisors to the resPatients/the public and researchers collaboraprocess that has been instigated elsewhere‘Professional’ and community researchers woand all contribute skills, or experience that a

Patients/the public have overall control of the 

` To provide the Somali community and healthcare professio

a knowledge base to inform action

◦ To understand socio-cultural influences on the prevention, diagno

treatment of TB within the Somali community

◦ To gain insight into healthcare professionals’ perceptions of the So

population’s responses to TB and their experiences of TB services f

` To identify avenues through which culturally appropriate h

promotion initiatives regarding the prevention of TB can reSomali community.

` To foster closer relationships between Somali community-

organisations and healthcare professionals to support initpromote the prevention and effective screening, diagnosis treatment of TB 

` To develop network of partners to initiate and carry out fu

research projects
` Community participatory 

approach

` Ethnographic fieldwork ` Qualitative methods

◦ interviews, focus groups

` ‘Framework’ approach to data 

analysis (Ritchie and Spencer 1994)
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research

ReseaacademspeciacommReseacomm
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research

ReseaacademspeciacommReseacomm

Data collection and analysis undertaken as a collaborative enterprise
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research

ReseaacademspeciacommReseacomm

Data collection and analysis undertaken as a collaborative enterprise

Findings disseminated to different audiences by different means e.g. reports, action briefings, poetry, stories
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionals andSomali community leaders identified need for research

ReseaacademspeciacommReseacomm

Data collection and analysis undertaken as a collaborative enterprise

Findings disseminated to different audiences by different means e.g. reports, action briefings, poetry, stories

Somali community organisations, Somali health workers and healthcare professionals implement public health actions and training for healthcare professionals 
Identifying the 

problem

Defining the 

research question

Designing th

study

Conducting 

the research

Disseminating 

the findings

Taking action 

informed by 

research

Identifying 

new priorities

Integrated KT approach

Healthcare professionalsSomali community leaders identified need for research

ReseaacademspeciacommReseacomm

Data collection and analysis undertaken as a collaborative enterprise

Findings disseminated to different audiences by different means e.g. reports, action briefings, poetry, stories

Somali community organisations, Somali health workers and healthcare professionals implement public health actions and training for healthcare professionals 

Type 2 diabetes identified as new research priority by the Somali community and healthcare professionals
Time scales perceived to be slo

- Delay in securing funding- Bureaucracy of approval mechanImpatient to share findingsFunding for disseminationImpact of research findings on and practice
Hard to detach personal experie

that of interviewees (over-identiDealing with interviewee’s emotHard to know when to stop probDifficult not to interrupt to offer solutions
Balancing different interests and agen

Need for flexibility, openness to new willingness to learnBeing prepared to be challengedPower sharingAnalytic methodsHow far is theory development and knowleoff against the pragmatism of involvemen
Identification of the need for 

Design and management of thUndertaking the projectDisseminating the findings / uptake of quality improvemen
Knowledge to Action cycle

(Graham et al 2006) Collaborative partnership modworking Joint ownership of projectsMonitoring and feedback loop
Defining the problem •Patient & public governors from NHS Trus

•Patient Information Group involved in guid

Adapting knowledge to local context

•Hospital volunteers collecting data using 

questionnaire Assessing barriers

•Patient & public governors members of Pr

Project planning and management

•Observation data of nutrition in hospital w

information from patients

Evaluating the patient 

perspective

•Project Steering Group - recommendation

Scaling up and out •NHS Trust Board – promoting uptake acro
•Roles of researchers and patient/public members are agreed

•Researchers respect the differing skills, knowledge and experie

patient/public members

•Researchers ensure that they have the necessary skills to involv

members in the research process

•Patient/public members are offered training and personal supp

research involvement

•Patient/public members are involved in decisions about how pa

recruited and kept informed about the progress of the research

•Patient and public involvement is described in research reports•Research findings are made available to patients and the wider 

formats and in language that they can easily understand

•Budgets should include all costs of PPI in research

Telfo

` http://www.invo.org.uk

` http://www.invo.org.uk/pdfs/GoodPracticeA5d3%2023020

February An A5 leaflet for researchers, research commissioners/funmembers of Research Ethics Committees and it may also be members of the public

` Graham I et al. (2006) Lost in knowledge translation: Time 

Journal of Continuing Education in the Health Professions, 

` Grant G & Ramcharan P (2010) User involvement in Researc

& A Lacey The Research process in Nursing. Oxford, Wiley 36-49

` Telford R, Boote J, Cooper C. (2004) What does it mean to i

consumers successfully in NHS research? A consensus stud

Expectations, 7(3) 209-220