Tweeting and Priority Setting Partnerships – by Sandra Regan, JLA Adviser.
Increasingly, social media is being seen as a key route to encouraging people to get involved with Priority Setting Partnership (PSP) activities. Whether they are the people with a health condition or issue, their family or friends, or one of the many types of professional who support and treat, many of the key folk a PSP wants to reach will have a Twitter account, be on Facebook, or use other social media that I have probably never even heard of!
Read the full article on our website.
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First impressions – by Catherine White, JLA Adviser.
I probably shouldn’t admit this… but for the first 35 years of my life, I never gave medical research a second thought. In fact not even a first thought. After a serious illness, it still didn’t cross my mind. Then, through my voluntary work with ICUsteps (an intensive care patient and relative support charity), I was invited to join the steering group of a research trial as a patient representative. This finally sparked my interest in medical research, and in particular the contribution that lay people can make.
Read the full article on our website.
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NIHR and BSG launch top 10 research priorities for alcohol-related liver disease
‘What are the most effective ways to help people with alcohol-related liver disease stop drinking?’ is the top priority question for alcohol-related liver disease research, according to new results from the JLA’s Alcohol-Related Liver Disease Priority Setting Partnership (PSP).
 Research into alcohol-related liver disease has been highlighted as a priority by the NIHR, which jointly funded the James Lind Alliance (JLA) PSP with the British Society of Gastroenterology (BSG). Alcohol-related liver disease has become the most common type of alcohol-related death in England. It accounted for 64% (4,441) of all alcohol-related deaths in 2011, and for 65% and 62% of male and female alcohol-related deaths respectively - most among those aged 50-59 years.
Read the full story on the PSP website.
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Looking beyond the PSP interventions: a thematic analysis of the perceptions and experiences of people in palliative and end of life care
Marie Curie published the results of its Palliative and end of life care Priority Setting Partnership (PeolcPSP) in 2015, achieving its aim to identify the interventional research questions in palliative and end of life care. But beyond these questions was a broader and important set of issues and concerns that patients, families and health professionals wanted research to answer, that could not be ignored. In their new report ‘Beyond the questions’ – a thematic analysis of this data – Dr Annmarie Nelson shares the experiences and insights of patients, carers and clinicians in palliative and end of life care and calls for more social science research in this area.
Read the full news item on our website.
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New and emerging treatments for corneal disorders
The National Institute for Health Research (NIHR) Horizon Scanning Research and Intelligence Centre (HSRIC), working with Fight for Sight, has identified 130 new and emerging technologies and procedures for treating corneal disorders. Together, they have the potential to help thousands of people with conditions such as keratoconus. However the report reveals a lack of developments for the leading causes of sight loss in corneal disorders and main reasons for corneal transplant.
Read the full news item on our website.
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Womb Cancer Priority Setting Partnership wins New Media honours
Dr Emma Crosbie, the NIHR Clinician Scientist who initiated the Womb Cancer Priority Setting Partnership, has been awarded a ‘Highly Commended’ honour in the NIHR New Media Competition. The film about the partnership (called the ‘Womb Cancer Alliance’) was recognised by the judges for effectively demonstrating how patients can help researchers to decide on research priorities.
Read the full news item on our website.
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Articles and publications
Here are some recent articles and publications from JLA PSPs. You can find all of these and more on our website.
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Kidney Transplant
Knight SR, Metcalfe L, O'Donoghue K, Ball ST, Beale A, Beale W, Hilton R, Hodkinson K, Lipkin G, Loud F, Marson LP, Morris PJ, Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership. PLOS one, October 24 2016, doi:10.1371/journal.pone.0162136
Pressure ulcers
Cullum N, Buckley H, Dumville J, Hall J, Lamb K, Madden M, Morley R, O'Meara S, Saramago Goncalves P, Soares M, Stubbs N, Wounds research for patient benefit: a 5-year programme of research. NIHR Journals Library, August 2016, doi: 10.3310/pgfar-04130
Surgery for common shoulder problems
Rangan A, Upadhyaya S, Regan S, Toye F, Rees J, Research priorities for shoulder surgery: results of the 2015 James Lind Alliance patient and clinician priority setting partnership. BMJ Open, 2016, doi:10.1136/bmjopen-2015-010412
Womb cancer
Wan Y L, Beverley-Stevenson R, Carlisle D, Clarke S, Edmonson RJ, Glover S, Holland J, Hughes C, Kitchener HC, Kitson S, Miles T, Morley R, Morrison J, Nelson L, Powell M, Sadler L, Tomlinson A, Tylko-Hill K, Whitcombe J, Crosbie EJ, Working together to shape the endometrial cancer research agenda: The top ten unanswered research questions. Gynecologic Oncology, September 2016, doi:10.1016/j.ygyno.2016.08.333
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Other recent articles of interest
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Avoiding waste in medical research by Caroline Fiennes, first published in the Financial Times
Lemons and limeys: The man who helped to cure scurvy by Marcus White, BBC News
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The JLA team and Matt Westmore, Director of Finance & Strategy at NETSCC, on James Lind’s 300th birthday.
