Work Programme 3 – Core Outcome Set (COS)

Work Programme 3, based at Lancaster University, has been busy sharing its work at other meetings and conferences over the summer.   In July, Andrew Harding gave a presentation at the British Society of Gerontology meeting in Swansea, on how WP3 has privileged the views of people living with dementia in the study design, which was well-received. A week or so later the Division of Health Research at Lancaster University funded Andrew to travel to San Francisco to take part in the 2017 meeting of the International Association of Gerontology and Geriatrics, the theme of which was Global Aging and Health: Bridging science, policy and practice. His presentation focused on the differences noted between trial outcomes vs what is important to people living with dementia. See photographs from the conference below.

Having gained a successful NHS REC ethics amendment, recruitment is due to start soon for a Delphi survey involving people living with dementia, care partners, health & social care professionals, researchers and policymakers/commissioners. Anyone interested in taking part is invited to contact Andrew Harding (a.harding5@lancaster.ac.uk ) for further information.

Andrew presenting at IAGG, San Francisco
Andrew presenting at IAGG, San Francisco
Andrew’s presenter badge at IAGG
Andrew’s presenter badge at IAGG

Work Programme 3 was invited to attend the 2017 Town and Gown event on 7 September in Lancaster Town Hall and used this public event to display a recruitment poster and distribute Delphi survey flyers.

Work Programme 3: Impacts and Outputs, December 2016

Our main areas of activity during 2016, our second year:

  • Dr Hazel Morbey and Dr Carol Opdebeeck attended the British Society of Gerontology Annual Conference, BSG 16 on 5-8 July held at Stirling University, Scotland where they gave a presentation on “What is important to people with dementia? Neighbourhoods and Dementia programme study: Core Outcome Set (COS) for People with Dementia Living at Home”

 

Hazel Morbey and Carol Opdebeeck at BSG 2016
Hazel Morbey and Carol Opdebeeck at BSG 2016

 

Presentation given by Dr Hazel Morbey and Dr Carol Opdebeeck
Presentation given by Dr Hazel Morbey and Dr Carol Opdebeeck

 

  • Dr Siobhan Reilly and Dr Hazel Morbey attended COMET VI held on 10-11 November 2016 in Amsterdam where they gave a presentation entitled “Constructing the long list of outcomes: what can we learn methodologically?”

 

Dr Siobhan Reilly and Dr Hazel Morbey at COMET VI conference
Dr Siobhan Reilly and Dr Hazel Morbey at COMET VI conference

 

  • A face-to-face Advisory Group was held at The Storey Institute, Lancaster on 18 May 2016
  • Abstract “A Neighbourhoods and Dementia Study: What is Important to People with Dementia Versus Trial Outcomes” accepted by IAGG17 San Francisco
  • Abstract accepted by British Society of Gerontology Conference in Swansea in July 2017
  • We have established lead Clinical Research Network support by Greater Manchester CRN http://www.nihr.ac.uk/nihr-in-your-area/greater-manchester/
  • We have maintained links with our local member involvement groups and with our Advisory Group members. We have gained their feedback and input to the design and trial of study materials
  • Data collection phase 1 interviews and focus groups were conducted and included the following stakeholder groups:
    • People living with Dementia
    • Care Partners
    • Health and Social Care Professionals
    • Policy makers and commissioners of services
  • Researchers collaborated with WP1 to design accessible study documents and materials for interviews and focus groups for people living with dementia and their care partners.
  • A literature review has been conducted to generate a list of outcomes reported in trials of non-pharmacological interventions for people with dementia.  This includes clinical trials identified through ALOIS which is a comprehensive specialised register of controlled dementia trials, created and maintained by the Cochrane Dementia and Cognitive Improvement Group.
  • We are working and consulting with local and regional dementia groups and memory cafes. People living with dementia and their care partners have provided feedback on Delphi Survey design, accessible study summaries and Delphi Survey items and other study tools. This work is ongoing as we approach piloting of the Delphi survey with our key stakeholder groups.
  • We have collaborated with two other Neighbourhoods and Dementia Work Programmes:WP4 to share qualitative data, themes and early findings. WP6 to conduct stakeholder interviews in Sweden which are included in our qualitative data analysis.
  • The study team took part in the WP1 Communication and Dementia Workshop held in September 2015 at the University of Manchester.
  • Team members have utilised the service provided by WP8, for professional and well-being support while working in the area of dementia research.
  • We said goodbye to Research Associate Carol Opdebeeck who moved to the University of Manchester to take up a lecturer position, and welcomed Andrew Harding who joins the team from Bournemouth University.
  • We regularly Tweet using the @nbdem Twitter account

 

Work Programme 3: Impacts and Outputs, Dec 2015

Our main areas of activity during our first year:

  • We have registered our work with the COMET initiative
  • We have gained ethics approval from:
    • Lancaster University
    • Wales Research Ethics Committee 5, Bangor
  • We have established lead Clinical Research Network support by Greater Manchester CRN
  • We have established member involvement on Advisory Group and involvement in design of study materials
  • Data collection phase 1 interviews and focus groups has commenced to include the following stakeholder groups:
    • People with Dementia
    • Care Partners
    • Health and Social Care Professionals
    • Policy makers and commissioners of services
  • A literature review is underway to generate a list of outcomes reported in trials of non-pharmacological interventions for people with dementia.  This includes clinical trials identified through ALOIS which is a comprehensive specialised register of controlled dementia trials, created and maintained by the Cochrane Dementia and Cognitive Improvement Group.
  • We have established links with local Dementia and memory cafes
  • A team member attended the 2015 COMET annual conference in Canada
  • We have also presented this work to clinicians, health and social practitioners and members of the public and voluntary sector at the Centre for Ageing Research, Lancaster University, Dementia Futures Event in September 2015.