Research Design Service: East Midlands
National Institute for Health Research

Latest News

GRIPP - guidlines to help reporting on public involvement

  Created on Thursday, 07 Sep 2017. Posted in Public Involvement

GRIPP 2 is a set of guidelines developed and agreed (via international consensus) as useful for helping researchers to report about their public involvement in journals. It is the first international effort to improve the quality and transparency of reporting about public involvement.

As such it provides researchers a useful tool when writing their application for research and dissemination strategy/impact. It also offers useful pointers about where public involvement impact on individual research studies can be reported.


Consultation: draft national standards for public involvement in research

  Created on Monday, 10 Jul 2017. Posted in Public Involvement | Toolkit/Database

A set of national, core standards and indicators for public involvement (PI) in research that can be used by organisations, research projects and individuals to improve the quality and consistency of PI has been developed. The next stage is to engage a wide range of interested groups, organisations and individuals to help review and improve the draft standards and indicators.

Please visit the project website for more detailed information about the consultation process and to access all the resources that might be needed. The consulation will run intil 1 September.

 


Patient and Public Involvement and Engagement Plan 2016/18

  Created on Wednesday, 05 Jul 2017. Posted in Public Involvement

Public contributors bring a wealth of knowledge and insights to research based on their personal experiences as users of health and social care services and treatments. For example, who better to ask if a research question is relevant and important to patients and carers, than its potential beneficiaries? Or whether the frequency and timing of a series of tests proposed by researchers would actually be acceptable to the patients and carers that they plan to invite to take part in the research?

Each of our objectives are summarised in the Action Plan and cover the areas of:

  • Reach,
  • Support,
  • Knowledge,
  • Integration
  • Communication and accessibility

Research Involvement Toolkit

  Created on Wednesday, 21 Jun 2017. Posted in Public Involvement | Toolkit/Database

About the Toolkit:

  • This is a resource for researchers who want to involve people affected by cancer in their research (at any stage). It is not a resource to support researchers with engagement activities, or with recruiting to clinical trials. 
  • It aims to support researchers to plan, deliver and evaluate Public and Patient Involvement (PPI)
  • It’s designed to be easy to use and to meet the researcher needs surfaced in researcher surveys conducted by CRUK and also the Shared Learning Group for Involvement in Research 
  • The Toolkit has been developed to be open access – a single Username and Password has been created so that any researcher (or member of the public/staff) can access the Toolkit
  • The Toolkit will be reviewed and refined on an ongoing basis in order to respond to researcher needs and feedback.

Log in with the following username and password
Username: CRUK\InvolvementToolkit
Password: CRUKInvolvement


Report on evaluating the extent and impact of young people’s involvement in research

  Created on Tuesday, 20 Jun 2017. Posted in Public Involvement | Young People

This project was commissioned by the James Lind Initiative to look at young people’s involvement in the design and delivery of NIHR studies. The report makes recommendations on how NIHR could find out more about who is involved in research and how, as well as what difference this involvement makes to research and to the young people involved.


Patient/public involvement: Should money come into it?

  Created on Tuesday, 13 Jun 2017. Posted in Public Involvement

Across the UK health and care sector, many thousands of people are involved as patient/public representatives. As committee members, research participants, focus group contributors and survey respondents, they offer huge amounts of time and "expertise by experience" - nearly always as volunteers.

If patient and public input to the sector's learning and development has a value, should the value be recognised? Should our volunteer contributors become paid contributors? Canada's Change Foundation has considered the issue. They recognise that payment for patient and public involvement (PPI) could undermine the ethos of volunteerism, or could engender a sense that opinions are being bought, rather than freely sought.  

But they also consider the downside of volunteerism. This includes the possibility that expecting people to participate without payment could mean that low income patients are excluded from deliberation and debate. This matters in the context of health inequalities, where the most vulnerable in society are already relatively voiceless.  

The authors state that they are "neither for nor against paying. Our concern is to work within the principles of fair, equitable and barrier-free public engagement". So they decide the payment issue on a case-by-case basis.

To help them do so, they have developed an easy-to-use decision tool. This sets the question of payments for PPI against parameters that guide decision makers towards a rational outcome. By using the tool, you may or may not end up paying PPI participants.  But at least you'll be able to explain how you have come to your decision


Article: A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

  Created on Wednesday, 12 Apr 2017. Posted in Public Involvement

Researchers are encouraged to involve the public as early as possible in the process of designing their studies, but this work is not subject to ethical review. This paper looks at ten areas where ethical issues may arise and has used them to develop a framework to help researchers and the public work ethically together in the early design stages.

This paper is an opinion piece informed by first-hand experiences of providing advice on involving the public as part of our National Institute for Health Research (NIHR) Research Design Service (RDS) roles. It also builds on consultations with approximately 20 lay people and 25 researchers during public involvement workshops held in the last 3 years in the East Midlands region.


Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme

  Created on Wednesday, 12 Apr 2017. Posted in Public Involvement

This paper reports on setting up a training programme for lay assessors delivered collaboratively by research organisations across the East Midlands region.

A recognised method for public involvement consists of consulting with patients and the public for their views on various research materials. To support lay people to be able to carry out these tasks they require basic knowledge of how research works and to be familiar with terminology and good practice. The training programme was developed to support this learning and evolved from participant feedback and consultation.


Masterclass on engaging with seldom-heard groups

  Created on Monday, 27 Mar 2017. Posted in Public Involvement

EMAHSN run regular masterclasses on how to effectively engage underserved communities. Contact Katie Swinburn for more information.

Listen to the most recent session focusing on Gypsy Roma Traveller communities:


CERTAIN Patient Advisory Network's INSPIRE Research Portal

  Created on Monday, 27 Mar 2017. Posted in Public Involvement

The portal is an online library of resources designed for patients and researchers partnering on patient-centered outcomes research (PCOR), healthcare studies that actively engage patients in the research process from start to finish. The purpose is to provide easy access to existing tools and resources for this research community.