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What can we do when the research isn't answering our questions?

Do you have questions about treatments used in your practice, which cannot be answered by existing research?

The James Lind Alliance (JLA)1 defines these 'treatment uncertainties' as conditions where there is no up-to-date, reliable and systematic reviews of research evidence addressing the uncertainty about the effects of the treatment, or no up-to-date systematic reviews of research evidence showing that uncertainty exists.

I can at least bring you some good news to end the year. Within dermatology, although multiple uncertainties remain, many are now being or have been addressed with priority setting partnerships (PSP)2 facilitated by the JLA. PSPs enable clinicians, patients and carers to work together to identify and prioritise uncertainties about the effects of treatments that could be answered by research. 

Focusing on specific conditions or healthcare settings, the PSPs:

  • bring patient, carer and clinician groups together on an equal footing.
  • identify treatment uncertainties (questions about treatments which cannot be answered by existing research) which are important to all groups.
  • work with all groups to jointly prioritise identified uncertainties.
  • produce a final list (often a 'Top 10') of jointly-agreed research priorities, publicise them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access.
  • provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.

So if you have any future questions please use the gift of the JLA PSPs to address these 'treatment uncertainties' to inform your clinical practice and future research.

PSPs are informing research in the following dermatology conditions:

  • Acne

PSP: acnepsp.org

Research: Layton A, Eady EA, Peat M, et al. Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting PartnershipBMJ Open. 2015;5:e008085

  • Cellulitis

PSP: nottingham.ac.uk/research/groups/cebd/projects/3cellulitis/cellulitis-psp/index.aspx

Research: Thomas KS, Brindle R, Chalmers JR, et al. Identifying priority areas for research into the diagnosis, treatment and prevention of cellulitis (erysipelas): results of a James Lind Alliance Priority Setting Partnership. Br J Dermatol. 2017;177:541-543

  • Dystrophic Epidermolysis Bullosa

PSP (Spain): jla.nihr.ac.uk/priority-setting-partnerships/dystrophic-epidermolysis%20-bullosa-spain/

Research: Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, et al. Current dystrophic epidermolysis bullosa research does not match research needs perceived by patients and cliniciansJ Am Acad Dermatol. 2014;71:1008-1011

Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, et al. Prioritization of therapy uncertainties in Dystrophic Epidermolysis Bullosa: where should research direct to? An example of priority setting partnership in very rare disordersOrphanet J Rare. 2013;8:61-69

  • Eczema

PSP: jla.nihr.ac.uk/priority-setting-partnerships/eczema/

Research: Batchelor JM, Ridd MJ, Clarke T, et al. The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritise important research questions for the treatment of eczemaBr J Dermatol. 2013;168:577-582

  • Hair Loss

PSP: alopeciaonline.org.uk/hairloss_PSP.asp

  • Hidradenitis Suppurativa

PSP: jla.nihr.ac.uk/priority-setting-partnerships/hidradenitis-suppurativa/

Research: Ingram JR, Abbott R, Ghazavi M, et al. The Hidradenitis Suppurativa Priority Setting PartnershipBr J Dermatol. 2014;171:1422-1427

  • Hyperhidrosis

PSP: hyperhidrosis.our.dmu.ac.uk

  • Lichen Sclerosus

PSP: nottingham.ac.uk/research/groups/cebd/projects/5rareandother/ls-psp/index.aspx

  • Lyme Disease

PSP: lymediseaseaction.org.uk/what-we-are-doing/research/

  • Psoriasis

PSP: psoriasis-association.org.uk/research/psp

Research: Majeed-Ariss R, McPhee M, Bundy C, et al. on behalf of the Psoriasis PSP Steering Group. Developing a Protocol to identify and prioritise research questions for psoriasis: A James Lind Alliance Priority Setting PartnershipBr J Dermatol. 2017;epub ahead of print

  • Vitiligo

PSP: nottingham.ac.uk/research/groups/cebd/projects/vitiligo-psp/index.aspx

Research: Eleftheriadou V, Whitton ME, Gawkrodger DJ, et al. Future research into the treatment of vitiligo: where should our priorities lie? Results of the vitiligo priority setting partnershipBr J Dermatol. 2011;164:530-536

Eleftheriadou V, Whitton M. Top Ten uncertainties for the treatment of VitiligoDispatches (The magazine of the Vitiligo Society). Reproduced with kind permission of the Vitiligo Society. 2011

Lushey C. Setting priorities and reducing uncertainties for people with skin disease (SPRUSD)Dispatches (The magazine of the Vitiligo Society). Reproduced with kind permission of the Vitiligo Society. 2009

Whitton M. The James Lind Alliance: An important initiative in fostering good research practices in all spheres of medicin. Skin Care Campaign News. 2005;32:9

Resources

  1. James Lind Alliance: jla.nihr.ac.uk/about-the-james-lind-alliance/
  2. Priority Setting Partnerships: jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm

Sandra Lawton is nurse consultant dermatology at The Rotherham NHS Foundation Trust and past chair of the British Dermatological Nursing Group