SEC3 2014 Engaging Leeds Welcome to the Public Engagement Symposium at SEC3 2014 Chaired by Alexa...

SEC3 2014 Engaging Leeds

Welcome to the Public Engagement Symposium

at SEC3 2014Chaired by Alexa Ruppertsberg,

FMH


Engaging Students: public engagement – where does it

begin and end?

Public Engagement Symposium

Stella CottrellDirector for Lifelong Learning


Students as partners in the creation and delivery of outreach

activities


Dr Dave LewisIMST, FBS

[email protected]


Business and Community Engagement; In the Curriculum


Dr Sarah UnderwoodLecturer in Enterprise

Director of Undergraduate Student Education (LUBS)

Deputy Director of Leeds Enterprise Centre


• Why?

• The broad range of engagement with the community across the curriculum

• Example – LUBS2015 Volunteering & Enterprise

• How can we foster these relationships?

What’s to discuss?

Dr Sarah Underwood, Public Engagement Symposium



Why?


• Guest lectures• Speaker series• Live case studies• Assessed projects• Student mentor

Breath of opportunity increases interest and helps to build stronger relationships

How do we engage the community with the curriculum?



• Example of holistic engagement with a module• 10 credit, elective module, level 2, semester 2

Businesses (O2, logistik, Pincent Masons) // Community Groups (Holbeck in Bloom, Growing Zone, Wye Beck Valley Pride)

Students understand and critique (CSR) corporate social responsibility policies

Design a project that meets the CSR agenda and serves the community group

Day of Action – with businesses!

Students reflect on project

LUBS2015 Volunteering & Enterprise


• Needs management and co-ordination• Should be seen as beneficial on all sides• Find ways to recognise, reward and sustain a lasting

relationship… e.g. Enterprise Ambassadors

Sustaining the relationship


Thank you for listening!



Delia MuirPatient and Public Involvement (PPI) Officer

Leeds Institute of Clinical Trials Research

What’s to be gained from

Patient Public Involvement (PPI)

in the design and delivery of clinical research?

Dr Sue PavittReader in Applied Health Sciences

Leeds Institute of Health Sciences

Dr Paul HydeClinical Lecturer Restorative Dentistry

School of Dentistry

Overview

Aim

To understand how Patient Public Involvement (PPI ) can add value to clinical research

Objectives

Review the role for PPI in ensuring the research has patient benefit focus

Illustrate through a Leeds led dental clinical trial how PPI can contribute to improve:

The relevance of the research question Study success – design, operation and delivery of clinical research Advancement of scientific knowledge Delivery of patient benefits

Context - why do we do Clinical Research?

Evaluate whether a new treatment or device can help people with a particular medical condition?

Determine what is the most effective treatment/ care for people with that condition

To allow medical professionals and patients to gain information about the benefits, side

effects and medical uses of new treatments

Discover new ways to use existing therapies

e.g. using aspirin in patients recovering from strokes

What is Patient Public Involvement (PPI)?

What is Patient Public Involvement (PPI)?

Who are the PP in PPI?

By Public and Patient we mean:

• Patients / potential patients

• People who use health and social services

• Carers (unpaid)

• Family members

• Disabled persons

• Members of the public

• Organisations that represent patients and public’s views

• Individuals/groups that are affected by health or clinical issues

What is the I in PPI?

‘An active partnership between the public and researchers in the research process…’

Research with or by the public

Research to, about or for the public

IMPROVES PATIENT PUBLIC

AWARENESS OF IMPORTANCE OF CLINICAL RESEARCH

Levels of Involvement

Increasing empowerment of PPI reps within the research process

USER CONTROL

Focus of power, initiative & decision

making is with service users

PARTNERSHIP/

COLLABORATIONActive collaboration

between ‘professionals’ and lay people

CONSULTATION

Lay views used to

inform decision-making

ENGAGEMENT

Education / Knowledge transfer

to Public

Why should we do PPI?

PPI ensures research has patient relevance and asks the right question

PPI in Designing a Research Study

The Important 4th Question: What do patients think?Are we asking the right question to improve the

health and quality of life for patients?

Questions asked in Designing a Clinical Study

1st choices among research priorities in survey of patients*

Surgery - Knee replacement (35.8) Education and advice (20.9) Complementary therapy (6.0) Drugs (4.5) Injections in the knee (4.5) Physical therapy (3.0) No treatment at all (1.5) Miscellaneous other priorities (23.9)

* Tallon D, Chard J, Dieppe P.

Relation between agendas of the research community and the research consumer. Lancet 2000; 355:2037-40.

PPI and research priorities:

Osteoarthritis of the knee

380 trials of drugs29 trials of complementary therapies24 trials of physiotherapy/exercise14 trials of education13 trials of surgery

Analysis of 460 randomised trials of treatments for osteoarthritis of the knee

Case Study 1: Getting the right research question(s)

Example from Oral Cancer

Oncologist & surgeon – focus 5-year survival at any cost

Trial designed to address future patients needs - providing complete impact of treatment on survival and quality of life

Patient sees trial as important and more likely to participate

Patient – focus quality of life issues – function & disfigurement

The impact of Patient Public Involvement on design, recruitment and operations of

Clinical Trials

Carol and Shirley helped work with the research team to help us understand how the loss of all their natural teeth has impacted on their life

How denture wearing affects daily activities like eating, talking and laughing

How poor fitting dentures can lower your self-esteem and be painful

We understood the importance of constructing a complete set of dentures for the patient and their confidence and being self-assured about their appearance and everyday activities in public – smiling & eating

Case Study 2: PPI – Co-Designing a Denture trial to meet patient needs

Case Study 2: PPI – Impact on Participant Literature

Trial Literature Reviewed Recommendations to make the

Patient Information Leaflets more understandable

Improved Trial Operations Trial is explained better – results

in improved uptake Timely ethics approval Recruited participants on time

IMPROVDENT – A clinical trial to improve the fit of dentures by testing two dental impression materials

Case Study 2: PPI – Impact on Trial Design

Trial Design Reviewed The PPI reps made recommendations for

comparing the two denture sets accounting for how people wear

their dentures Ensured patient reported

outcomes measured Ensure qualitative research has

informed guided questions

Improved Pragmatic Trial Design Trial is more participation friendly

Improved Patient reported outcomes

Trial is more likely to yield meaningful data for tangible

patient benefit

PPI reps are integral members of the trial management group

Case Study 2: PPI – Impact on Trial operations / logistics

Trial Operational input Appointments available largely

between 10am - 3pm Accommodates travel to

appointments on Senior Citizen Bus Pass

Improved Trial Operations Trial is “user friendly” Participants less

inconvenienced Few cancelled appointments Recruitment to schedule

PPI reps are integral members of the trial management group

AWARENESS ADDITIONAL SUPPORT

Better designed trials improve Recruitment & Retention

RECRUITMENT 2/3rds of trials fail to reach target and require expensive extensions

RETENTION 1/3rd enrolees drop out

Expensive extensions or Underpowered

trials

Trial team know that the PPI has improved trial operations and design resulting in a tangible impact on trial recruitment:

Faster ethics approval a timely trial opening

Participant friendly trial keeps refusals to a minimum

Maintains recruitment to schedule trial within budget

Case Study 2: PPI – Impact on Trial recruitment & retention

In Summary - Benefits of PPI

User involvement in clinical research is valuable and ensures:

Different perspectives heardFundable - Research priorities identified by patients deliver research that is relevant and likely to yield patient benefitsOutcomes important to users are measuredImproved research design Improved study logisticsAccess to patients - via peer networksAccess ‘hard-to-reach’ patient groups

Effective dissemination Improved research that addresses: Patient needs, Achieves recruitment & retention to timelineDelivers to target and within budget

The Future - PPI central role in Clinical Research

Improved Health

Study designed to take account of patients needs

Study operations / logistics made patient friendly

Patient literature simplified

Ensuring informed consent & good

enrolment to study

Patient

Benefit

Improved

Recruitment & Retention

Improved

Delivery of Clinical Research & Evidence-based

Medicine

Any Questions?

Dr Sue Pavitt

Leeds Institute of Health Sciences

[email protected]

+44 (0) 113 343 6985


How do you utilise the (unexpected) opportunity to communicate big-concept

national research to a non-expert audience?


Constanze VagelerSchool of Geography


Theatre in education outreach


Carreen DewFaculty of Medicine & Health

SEC3 2014 Engaging Leeds Welcome to the Public Engagement Symposium at SEC3 2014 Chaired by Alexa...

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