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Patients, Carers and the Public

Quick Links

Are you a patient, carer or member of the public who wants to get involved in research? Below are a number of ways you can!

Be Part of Research

The new Be Part of Research website (formerly the UK Clinical Trials Gateway) was launched on 20 May 2019 on International Clinical Trials Day.

The site gives everyone the chance to find out about clinical trials that are relevant to them.

To find out about studies taking place into your condition visit the site

 

 

 

Local activities

Details will be added here when events are being held.

Graham

Graham Reeder, a former teacher in Southend, was experiencing symptoms such as swollen fingers and difficulty getting to sleep, before eventually being diagnosed with rheumatoid arthritis.

"Being on the trial was an amazing experience.  I can understand people having reservations but I am very much one of those types of people who knows that they (the staff) are giving them (the medication) to me because they know what they are doing, and I put a lot of trust in these people, as I hope parents put a lot of trust in me when I was teaching their children.”

 

 

Research Champions

The new national Research Champion programme will be rolled out across North Thames in early 2020.

The Research Champion role is designed to address the problems of low public awareness and lack of diversity in research participants by providing a nationally-coordinated and assured way to help more of the public and patients to know about health and care research. By talking about research in everyday spaces and places where people are - GP surgeries, hospital waiting rooms, community groups, patient groups, social media and amongst family and friends - we aim to make sure that everybody knows what health and care research is, what it involves and why it matters.

The aim of the Research Champions initiative is to build a bigger and more diverse research-aware patient and public community, and help reduce barriers to research participation for the public, to support the effective and efficient delivery of research. This is delivered through the objective of recruiting and supporting members of the public who are passionate about the importance of health and care research.

We are looking for all partner trusts across North Thames to put forward names of potential Research Champions to Christine Menzies, PPIE Manager: christine.menzies@nihr.ac.uk 
Research Champions include patients, carers, members of the public, and people who have taken part in a research trial before, as well as those who haven’t. Something that they all have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone.

You watch a video featuring one of our Research Champions on the right-hand side:

 Have a look at these resources for Research Champions:

For further details visit the national Research Champions page on the NIHR website.  

 

 

Participant in Research Experience Survey

Each year, we approach patients and their carers, asking them to tell us about their experience of taking part in a research study; both the good, and the not so great.

We conduct this survey to look for ways to improve how clinical studies are delivered, and to make sure all patients have the best possible experience of being in a study. The information given is then used to understand what works best for patients, and where we can make helpful changes in the way we do things.

One example of a change that has been made since reviewing their local Participant in Research Experience Survey data, is by the research staff from the Clinical Research Facility at University College Hospital, who are now asking patients during their early study visits if they know who to contact if they have an issue or concern while they are on the study. They are also using the data to escalate to senior staff the fact that patients are still having to experience long waits for blood results.

  

Last year's (2018/19) results told us:  

• 90% of adults in North Thames had a 'good' or 'great' research experience - a 2% increase on 2017/18
• 1,337 adults completed the survey
• Nine out of 10 adults said they would take part in research again in the future
• 81% of respondents found out about the research study they were on thanks to their doctor or nurse, and 91% of people knew who to contact if they had a question or concern throughout their participation in the study they were enrolled on.
• Last year, for the first time, children between the ages of five and 16 were surveyed
• 77.5% of children said they would take part in research again

**Participant in Research Experience Survey 2019/20 pilot extension**

Following the scheduled completion of the main part of the Participant in Research Experience Survey for 2019/20, three North Thames sites are now participating in a small pilot project which is continuing to collect feedback from participants over an additional five months, to 29 May 2020. The three sites are the Eastman Dental Hospital, part of University College London NHS Hospitals Trust, Princess Alexandra Hospital NHS Trust in Harlow, Essex and Essex Partnership University NHS Trust.

If you are a patient who has taken part in a trial over the last 12 months, or a current trial patient who would like to participate, speak to a member of your local hospital's research team.

Below are links to the surveys for those who wish to complete one electronically:

Adults: http://bit.ly/AdultPRES (Opens in new window)

Children aged 13-16: http://bit.ly/13-16PRES (Opens in new window)

Children aged 9-12: http://bit.ly/9-12PRES (Opens in new window)

Children aged 5-8: http://bit.ly/5-8PRES (Opens in new window)

Parents of children under 5: http://bit.ly/Under5PRES (Opens in new window)