Tag Archives: Steering Group

Second Steering Group Meeting Held on 30th March

The second Kidney Transplant PSP steering group meeting was held at the Royal College of Surgeons in London on the 30th March. The first survey was summarised – we received 498 uncertainties from 183 respondents, with an excellent mix of backgrounds (patient, carer and professional) and topics covering over 50 categories.

The steering group ran through the uncertainties submitted from the first survey and narrowed them down to 97 indicative uncertainties. Over the coming months, we will be working hard to identify existing evidence and develop a process for prioritisation.

The steering group would like to thank everyone who took part in the first survey. The strength of the PSP process is in getting input from as many patients, carers and professionals as possible to ensure that the final result represents your views.

First Survey Now Live!

After a lot of hard work, we are pleased to announce that the first Kidney Transplant PSP survey is now live.

Please visit the survey page to let us know your uncertainties regarding the management of kidney transplant recipients and living donors. The survey should take no more than 10 minutes to complete.

If you would prefer a paper version of the survey, either download a copy to print or contact us and we will put one in the post.

Please help us to promote this project by telling your friends/colleagues and mentioning us on social media!

Take the survey now!

Assessing the impact of patient involvement in research

One of the most common questions that we are asked by people (particularly clinicians) with whom we discuss the Kidney Transplant PSP is:

Does involving patients actually make any difference?

Intuitively, we think (and hope) that it should. Patients can provide an insight into what is important to them, or what might stop them from consenting to a clinical trial from a perspective that clinicians may not be able to see.

However, there is surprisingly little published evidence in support of patient involvement in research.  Perhaps the best existing study examining the impact of patient involvement is this systematic review  from Jo Brett and colleagues at the University of Warwick. They identified 66 studies reporting impacts from a range of involvements including research agenda setting (such as this PSP), development of patient-friendly information sources and surveys, trial recruitment, patient-centered data analysis/interpretation and study results dissemination. Whilst the quality of evidence is limited, they did find a number of positive reported impacts, particularly in the areas of trial recruitment and information provision. Interestingly, they also found a number of negative impacts, such as the costs/time involved, compromise of traditionally-accepted best research practice, and tokenistic attitudes to patient involvement.

The steering group for the Kidney Transplant PSP have been approached by a team led by Jennie Popay from Lancaster University and Rosamund Snow from the Nuffield Department of Primary Care Health Sciences, who are interested methods for assessing the impact of public involvement in research. They have developed an assessment framework to help researchers develop a strategy for assessing the impact that public and patient involvement have on research, and we will be using this alongside the Kidney Transplant PSP to truly assess, for the first time, the value of the JLA PSP process.

British Renal Society signed up as a partner

brs_logoWe are pleased to announce that the British Renal Society have signed up as a partner to the Kidney Transplant PSP.  This will give their members a voice in the prioritisation process, as well as helping us to publicise the initiative to a wide range of professionals involved in treating renal disease.

Dr Simon Ball, President of the society, will also be representing the BRS in the steering group.

First steering group meeting held in London

The first steering group meeting of the Kidney Transplant PSP was held today at the Royal College of Surgeon’s in London.  Representatives of all of our key partners attended the meeting, and there was much positive discussion about how to move the partnership forwards.

For more information about the steering group for this project, please visit here.

Full minutes from the meeting can be downloaded below.

 Minutes of the 1st Steering Group Meeting  London, 19th May 2014