Engaging with industry to promote and deliver renal research in the UK

This year’s programme and stand were jointly hosted and sponsored between the NIHR CRN and Kidney Research UK (KRUK) for which we are very grateful.

One hundred invitations were sent out and representatives from a tremendous 20
Industries / Clinical Research Organisations (CRO) ensured a capacity audience.

Prof Phil Kalra, Chair of the newly configured NIHR CRN: Renal Disorders Specialty opened the meeting emphasising our collaborative approach to delivering clinical trials and engaging with stakeholders with portfolio development activities. He introduced a prestigious group of speakers.

Prof lain Macdougall, Industry liaison for the renal disorders specialty gave an overview of our performance with industry led studies on the portfolio. “The health service needs industry as much as industry needs the health service.” The number of industry studies in the renal disorders specialty has more than doubled over the past two years and the number of studies closing to time and target has also seen a steady increase, lain explained how we can offer industry a dedicated pool of enthusiastic staff, a performance management team and clinicians who actively engage in biannual national meetings where each study is individually reviewed.

Michael Nation, Development Director at KRUK highlighted examples of successful engagement with industry. The success of PIVOTAL, sponsored by Vifor-Fresenius was discussed as an example of collaboration between industry, charity and NHS Trusts. Michael suggested that to move forward KRUK would be exploring a collaborative fellowship scheme with industry; a partnership to share knowledge and expertise and to invest in the future.

Dr Ajay Duggal was invited to give the point of view on behalf of ‘Industry’ and convey what Pharma ideally require from the UK trials structure. The clear message was “cost, quality and time”. Partnering with the UK is highly desirable but local legislation and duplication of processes is deterring companies from re-investing what is currently £5 billion annually. Set-up times and enrolment delays are impacting on the success of studies.

Keith Hodkinson, Chair KRUK Advisory Committee and President of the Scottish Kidney Federation spoke frankly as a patient giving a different perspective on patient, carer, public engagement and involvement. He left us with some thought provoking comments of whether academics and clinicians consider patients as people or accruals. He suggested that medical professionals should take more notice of the patient as a person and not undervalue them especially when it comes to patient retention. Are we aware of the impact certain decisions may have on a patient? A cancelled appointment, laying out for travel expenses or being told you have screen failed and cannot be accepted onto a study (which may be a patient’s only hope). Keith’s buzz words were “listen, interest and engagement”.

Finally, wrapping up the afternoon Joy Liao was invited to join us in her new role as Research Manager for the newly formed Diabetes, Renal, Endocrine and Metabolic disease themes in the new Division 2 of the restructured NIHR CRN. Joy delivered a whistle stop guide to the benefits to industry of the new structure.

Open discussion followed talks throughout the afternoon and the general feeling was that the meeting afforded a valuable opportunity to share in an informal forum strengths and weaknesses on both sides.

Whilst several companies follow the adoption route with all their studies others remained less aware of the network’s existence.

Important points for us to feedback and improve on – to help industry perceive us more favourably – are:

• To raise awareness of the NIHR CRN, to streamline the set up process between NHS Trusts and improve feasibility
• It is not enough to create a first class website unless it is sign posted and promoted in journals, out-patient clinics and in the general press
• Harmonising R&D approval to a single centralised process
• Improving enrolment rates possibly by considering a system for reliably estimating patient numbers

As I write the following morning, I can report that we have already received emails of thanks from CRO and pharma companies. The representative from PPD (a CRO) described the session as “very interesting, informative and really beneficial.” In particular the talk from our patient representative was described as “very thought provoking”. We have also received a request for a personal meeting with Otsuka, to gain an insight into the experience of clinicians and treatment pathways in the area of nephrology, focussing on ADPKD.

Phil Kalra had a further opportunity to promote the Clinical Research Networks in a session chaired by him and Michael Nation on the final morning of the conference. The session was entitled ‘Research – raising the game’ and Phil spoke about hot topics in research from the NIHR perspective. This time the audience included clinicians and healthcare professionals. Phil discussed improving trial delivery, working closer with industry, patient engagement, communication and working with key stakeholders. Caroline Savage, Vice President & Head of Experimental Medicine Unit at GSK was invited to deliver the Osman Lecture and she spoke about how industry and academia can collaborate to deliver clinical research; the key to delivering higher quality products being the ability to combine expertise. With Keith, our expert patient, delivering his presentation to this new audience, another informative meeting closed leaving the audience with plenty to consider.

I now know that no Kidney Week would be complete without the KRUK 5K fun run. Last year I was unprepared and walked briskly along Bournemouth beach as the sun rose but this year I was determined to run and with a little help from the NHS Choices ‘Couch to 5K in 9 weeks’ app, I reached the finish line in record time. This year the biggest challenge was the 6:00am start!

FROM the NIHR website - http://www.crn.nihr.ac.uk/news/engaging-with-industry-to-promote-and-deliver-renal-research-in-the-uk/?h=28