Britspine 2018

Patient Liaison Group - Tuesday 20th March 2018

The PLG was established after BritSpine 2014 in Warwick and BritSpine 2016 in Nottingham had both hosted Patient and Carer Public Involvement and Engagement (PCPIE) meetings on the Friday afternoon after the main conference had ended. The PCPIE meetings were run jointly by Jeremy Fairbank and Nick Birch in an attempt to bring together patients, carers and professionals involved in spinal research to create a collaborative network and discuss amongst other things priority setting in research.

 

The 2014 meeting was focused on introducing patient groups and charities to each other and to the spinal research community. Leading these groups were David Chapple representing Horatio's Garden as well as Cauda Equina UK, a charity representing people who were living with the consequences of cauda equina syndrome.

 

In Nottingham, there was a live, interactive debate concerning the design of a randomised controlled trial of high-frequency spinal cord stimulation for chronic pain. A patient group that had been recruited from the East Midlands considered the proposition of the lead researchers in the trial, including Profs Adnan Al Kaisy and Sam Eldabe, in real time, and they were able to feedback to the research team valuable information regarding patient engagement ahead of the trial protocol being finalised. A second discussion regarding cauda equina syndrome and its effect on patients, that was included as a direct consequence of the 2014 meeting, generated a considerable amount of debate and was apposite at the time since BASS and the SBNS were in the final stages of agreeing their cauda equina syndrome guidelines for UK spinal units.

 

It was realised after the success of the PCPIE meetings that a more formal structure would be required going forward and the Patient Liaison Group (PLG) model that has been successfully employed by the BOA for many years was chosen as the appropriate vehicle for the UKSSB. Linda Pollard was invited to be the first chair of the UKSSB PLG in 2016 and in her time at the helm the committee successfully defined its Terms of Reference and put in place an outline structure for future development. When Linda stepped down she was succeeded by Dr Paula Wray PhD, who holds the post of Senior Public Involvement Manager at NIHR INVOLVE, leading the diversity and inclusion work stream to develop methods and resources to support more diverse, representative and proportional investment in research and the broader health and social care systems.  She is ideally suited to lead the PLG in the coming years so that it embeds within BritSpine and the UKSSB a patient-centred view of spinal research, teaching and clinical delivery.

 

At BritSpine 2018 in Leeds, Dr Paula Wray will be chairing a half day PLG meeting on Tuesday 20th March ahead of the start of the main conference. The focus of the meeting reflects some of the priorities of the main BritSpine 2018 agenda including genetics and trauma. Dr Michael Wright, who is the president of the Restricted Growth Association, will be attending to discuss priority setting for research into spinal conditions in people of restricted growth. In addition, the Leeds led, NIHR funded, randomised controlled trial (pilot) of thoraco-lumbar burst fracture treatment will be introduced.

 

Part of the meeting will be devoted to a wider discussion regarding future development of the PLG and how groups across the UK can become involved actively to promote patient engagement in spinal research and care delivery.

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