PCPIE Resources

Welcome to the PCPIE resources page. We hope the information and links below will help you with any questions or difficulties you may have in this area. We have created a generic PCPIE presentation for anyone to use to learn more about PCPIE in research and for those who may need to engage people locally in PCPIE initiatives.

Please feel free to download the PowerPoint file below, you may modify accordingly using the appropriate acknowledgements:



Guy's and St Thomas' Charity

Guy's and St Thomas' Charity has turned its experience and insights from the frontline of patient and public involvement into a new guide with lessons and tips on how to achieve meaningful involvement. You can download the guide from the link below.



Healthcare Quality Improvement Partnership (HQIP)

HQIP commissions reports into the standards of care for specific conditions and publishes the results, enabling healthcare staff to act upon them and provide better care for patients and service users. HQIP holds the contract to manage and develop the National Clinical Audit Programme, comprising more than 30 condition-specific clinical audits, and the contract to promote, develop and support clinical audit at local level on behalf of NHS England and the Welsh Government.

Click here for HQIP's 2016 publication on Patient and Public Involvement in Quality Improvement.

HQIP's PPI pages are designed both for patients looking to be more involved in clinical audits and for organisations looking to achieve effective PPI in their clinical audits.



INVOLVE

INVOLVE is a national advisory group that supports PPI in NHS, public health and social care research. INVOLVE is funded by and part of the National Institute for Health Research (NIHR). The INVOLVE website has lots of useful information - for example there is a (Guide for Researchers about PPI) and guidance on payments and expenses is updated regularly. There is also guidance on writing a plain English summary of your research proposal. You can sign up to receive a regular newsletter and obtain information about events.

There is now new NIHR INVOLVE guidance on the use of social media to actively involve people in research

This guidance provides information on:

  • different types of social media currently being used to involve the public in research
  • examples of how social media is being used
  • benefits and challenges
  • risks and ethics
  • top tips and things to think about
  • jargon buster and useful reading

Useful Links and Downloads



PatientsLikeMe

PatientsLikeMe follows four core values: putting patients first, promoting transparency, fostering openness and creating "wow." On their website patients can share and learn from real-world, outcome-based health data. They work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients.



People in Research

People in Research connects members of the public to researchers who want to involve them in their work. You can use this website to advertise opportunities for involvement and for advice on how to recruit people to get actively involved in research.



Plain English Campaign

The Plain English Campaign works to ensure that everyone has access to clear and concise information. They offer training, editing and a kitemarking system (the Crystal Mark). The Plain English Campaign website features a number of free brochures, including one on how to write in plain English)



Research Design Service

The NIHR Research Design Service (RDS) supports researchers to develop and design high quality research proposals for submission to NIHR and other national, peer-reviewed funding competitions for applied health or social care research. There are ten NIHR Research Design Services. All have a PPI lead who can offer advice about PPI at the design stage. Some also offer grants to enable researchers to develop PPI in research before they have obtained funding. Some have a PPI group - members may be able to offer 'public' input at the design stage of a study.



The Public Involvement Impact Assessment Framework (PiiAF)

PiiAF has been produced to help researchers assess the impacts of involving members of the public in their research in diverse fields from health care to local history. The PiiAF Study Group includes academics, public involvement facilitators from NIHR Research Networks and members of the public, supported by a grant from the UK Medical Research Council.

The PiiAF Executive Summary is the gold standard on how to plan for and incorporate PPI in research. Not all of the recommendations would apply to every research proposal but it is a good place to start for guidance when considering PPI in your research.

You may also find the following links useful:



The User Involvement in Voluntary Organisations Shared Learning Group

This group aims to encourage shared learning about service user and/or carer involvement between voluntary sector organisations working within the UK. It has a website with lots of useful information, including a section on involvement in research. If you are planning research involving people with a specific condition or experience you might find it helpful to contact the relevant member organisation.