Welsh Government
Using patient experience to improve research proposals

Using patient experience to improve research proposals

"It was evident from our first meeting that they both felt passionate about this area of research..."
Jacqui Nuttall

The PACE Study aims to find out whether the results from a quick and safe finger prick blood test in the GP surgery can help doctors better decide if antibiotics are required for people with a flare up of their chronic obstructive pulmonary disease (COPD).

Chronic obstructive pulmonary disease (COPD) is the name for a collection of lung diseases. People with COPD have difficulties breathing, primarily due to the narrowing of their airways, this is called airflow obstruction.

The Health and Care Research Wales Public Involvement and Engagement Team were approached to find two members of the public who suffer from COPD to join the PACE Study Development Group and an advert was sent out to the Involving People Network in early 2013.

Jacqui Nuttall, South East Wales Trials Unit, worked with the two Involving People network members and could see the value they brought to the study straight away:

"It was evident from our first meeting that they both felt passionate about this area of research and believed the proposed research was relevant to the needs of the population it aims to benefit."

The network members quickly had an impact on the study by bringing a different perspective to the recruitment process.

From experience, the network members knew that at the time of a COPD flare up, patients can feel uncomfortable and vulnerable and suggested that it is not the best time to give them information about a study for the first time.

The recruitment process within the study funding proposal was amended so that all potentially eligible patients, at GP surgeries registered for the study, would be sent information about the research.

This would prevent patients being told about the study for the first time while having a flare up of theirCOPD. It also gave patients an opportunity to read information about the study and consider participating before they become unwell.

The PACE study was then submitted to an ethics committee and one of the network members was invited to an ethics meeting with the researchers.

Jacqui saw how important the network members’ experience could be at this stage of the research study design, too:

"Many of the questions that are asked by the ethics committee can be directly linked to patient understanding and perceived thoughts on study procedures.

"Therefore, who better to answer their questions than someone who understands better than anyone else on the study team what it feels like to live with COPD."

Margaret Barnard, is one of the Involving People Network Members working with the researchers on the PACE study. She was diagnosed with COPD in 2003 and needs oxygen and inhalers daily.

It’s clear why becoming involved in research opportunities like the PACE study is important to Margaret:

"Working for the good of others living with the same, or similar, conditions as you, is a very positive thing to do.

It not only makes you have more positive thoughts about yourself and the condition you are living with, but you are helping others be more proactive in the treatment of their condition."

Jonathan Bidmead, Involving People Network Member, is also involved in the study and has seen public involvement grow to become the essential part of the funding process it is today.

"I have been involved in research projects in the past and I am well aware of the problems that not having a public representative can lead to. Now it is rare to come across research which does not have a public representative."

What happened next?

The study was successful in gaining funding and Jacqui is clear how important the network members’ involvement was, believing that the patient representatives "helped immensely in obtaining this outcome."

The two network members are continuing their involvement in the study and are part of the PACE Trial Steering Group.

For more information about the PACE study, visit the South East Wales Trials Unit website.

To find out more about public involvement in Wales, visit www.healthandcareresearch.gov.wales/public

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