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January 2020
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Happy 10th Birthday COMET

COMET's second decade has begun. Ten years since the first meeting on 19th January 2010, the COMET website has had over 112,000 visitors from 189 countries, and over 33,000 searches have been completed in the database. There are minimum standards now in place for core outcome set development, protocols and reports. COMET has achieved so much in the last ten years and we are excited to see what the next ten bring.

L-R: Sarah Gorst (COMET Research Associate), Elizabeth Gargon (COMET Project Coordinator), Richard Crew (DelphiManager Developer), Paula Williamson (COMET Management Group), Jane Blazeby (COMET Management Group), Alice Biggane (COMET PhD Student)
 
COMET birthday cake featuring the original COMET Management Group, L-R: Mike Clarke, Elizabeth Gargon, Paula Williamson, Doug Altman, Jane Blazeby
NEW COMET website and database
 
The COMET website has been redesigned with a more contemporary layout that makes better use of space. The database has also undergone changes to both the search functionality and the results display. It now uses smarter searching to allow searches to be run more easily, and the search results are displayed whereby studies that are part of the same piece of research are grouped together.
Visit the COMET website
COMET VIII
***Registration is now open***
Merseyside Maritime Museum
The COMET Initiative will hold its eighth meeting in Liverpool on 8th to 9th October 2020. Planning is now underway and we are preparing an exciting programme. This will bring together individuals interested in the development and application of “core outcome sets” in many different areas of health care. There is no registration fee for the meeting. Delegates will be responsible for the costs of their own travel and accommodation. Visit the website now to find out more information about registering and submitting an abstract.
Visit COMET VIII website
Capturing Patient-Reported Outcomes (PROs) in Clinical Trials
 
Patient-reported outcomes (PROs) are increasingly assessed within trials using questionnaires completed by patients. These questionnaires seek to capture the patient's opinion on the impact of their disease and treatment on their life. They are used to inform future patients about the potential symptoms or quality of life they may experience on a particular therapy, thereby helping individual patients and their clinicians to choose the best treatment for them. Whilst PRO trial findings can be incredibly impactful, considerable care and planning is required to collect high-quality publishable data. PROlearn presents five key recommendations aimed at helping researchers to collect and disseminate PRO data according to current international best-practice. Step 1 is about 'Measuring what matters' to patients.
Visit the website for more information
Developing and disseminating a core outcome set for non-surgical interventions for type 2 diabetes
 
The SCORE-IT study has developed a Core Outcome Set (COS) for research of non-surgical interventions for type 2 diabetes that represents consensus between patients and health professionals.
 
People with type 2 diabetes have been involved in the study from the outset, as members the study steering committee (SSC).
 
In addition two Delphi survey participants, with type 2 diabetes, took on the role of patient partners and contributed further to the study by helping to develop an animated video to disseminate the SCORE-IT study result.
 
Patient partners co-designed, with researchers, a plain language animation and had a pivotal role in identifying the key messages of the animation, planning the script, the graphics and the characters, proposing patient and researcher characters to convey the collaborative nature of the study.  
 
Informing study participants of the study results is a key step in core outcome set development and it is hoped  that this animation will reach a wide audience and increase the accessibility of the research. You can watch the video here.
Congratulations to Dr Alice Biggane
 
Congratulations to Alice Biggane for passing her PhD viva examination. Alice's PhD focused on the inclusion of patients and members of the public in clinical outcome selection.  The aims of Alice’s PhD were to map the methods used to facilitate patient participation in COS development; explore participants’ experiences of these methods; and co-produce with relevant stakeholders an educational tool designed to aid participants in COS development. Additionally, Alice conducted an ethnography exploring patient and public involvement in clinical guideline development with a specific focus on clinical outcome selection.
Request to observe a consensus meeting
 
If you are running a COS consensus meeting in the next few months and are happy to have one or two observers at your meeting, can you please let us know.

Many thanks in advance.
The COMET PoPPIE Working Group - Heather Bagley & Bridget Young
 
The COMET PoPPIE Working Group was established in November 2014 to lead and oversee the public participation, involvement and engagement work of the COMET Initiative.  As we begin 2020, COMET’s 10th anniversary year, PoPPIE is delighted to announce three new members of its Working Group.
 
John Turner MBE, our new public co-chair*.  John is a former patient participant in a COS study, with a keen interest in patient and public involvement in diabetes research through his involvement in the Diabetes UK Grants Advisory Panel.  John is especially passionate about COS uptake and champions this in his PPI work.  John was awarded an MBE in 2019 for his volunteering roles in mental health and for services to young people.
Maureen Smith, our second public member, is a public research partner in two COS rare paediatric inherited metabolic diseases. Maureen is the co-chair of the Cochrane Consumer Executive. For the past 11 years, Maureen has been a member of the Board of Directors of the Canadian Organization for Rare Disorders (CORD) and is involved with Rare Disease International and the International Rare Disease Research Consortium’s Task Force on Clinical Research Networks.
Mandy Daly, a patient organisation member.   Mandy is one of the founding members and the Director of Advocacy and Policy Making at the Irish Neonatal Health Alliance. Mandy has worked on several core outcome set studies, providing a patient organisation perspective. She has also participated in COMET’s work on Standards for Reporting a Core Outcome Set and Minimum Standards for Developing Core Outcome Sets.

Mandy has recorded a new Podcast for the COMET website - you can watch it here now.
These members join our other PoPPIE Working Group members:
  • Maarten de Wit, a member who is a core outcome set developer with experience of public involvement. Maarten is a member of The OMERACT Executive Committee and a member of The OMERACT Patient Research Partner Support Team.
  • Jean Slutsky, a patient involvement organisation member.  Jean is Chief Engagement and Dissemination Officer at the Patient-Centered Outcomes Research Institute (PCORI).
  • Doreen Tembo, a patient involvement organisation member.  Doreen is Senior Research Manager for Patient and Public Involvement and External Review at the National Institute for Health Research (NIHR)Evaluations Trials and Studies Coordinating Centre in the UK and the NIHR Co-Chair for the NIHR Global Health Research Community Engagement and Involvement Working Group.
  • Jan Geissler, a patient organisation member.  Jan is founder and CEO of Patvocates, a think tank on patient advocacy, health policy and medical research and former Director of the European Patients Academy (EUPATI). Jan is a work package leader of the IMI2-funded EU Project HARMONY on big data for better outcomes in haematology.
  • Bridget Young, a researcher with an interest in methods for patient engagement. Research co-chair of PoPPIE and Professor of Psychology at University of Liverpool and former co-lead for the Patient Perspectives Theme of the Northwest Hub for Trials Methodology Research.
  • Heather Bagley, Patient and Public involvement Co-ordinator with The COMET Initiative, currently undertaking her PhD in optimising patient participation in core outcome set development.
Over recent years PoPPIE Working Group members have developed several resources for patients, patient organisations, and COS developers:
  • Plain language summaries explaining core outcome sets and the Delphi method, and our highly accessed plain language animation explaining COS to patients and the public. Our new “Nominal Group Technique Plain Language Summary” will shortly be released. (Note: all these resources have been developed with patient and public involvement).
  • Webinars for patient organisations – Join our upcoming webinar with the International Patient and Public Involvement Network on 27th February (16.00 hrs GMT).
  • Top tips / checklists etc. on many aspects of COS development including: how to involve patients in helping you design your COS study; how to run an accessible consensus meeting; and links to external resources that PoPPIE think COS developers would find useful when planning to include patients in their work.
Previous members, Rosemary Humphreys (former public co-chair) and Simon Denegri OBE, were key contributors to these resources.  Our PoPPIE Associate Panel members have also helped by commenting on our draft resources.
COMET is grateful to all the PoPPIE Working Group and Associate Panel members for their enthusiasm and dedication.  To find out more about PoPPIE’s resources click here.
 
*We use the INVOLVE definition of ‘public’ which includes patients and their relatives as well as members of the general public.
 
ChiCOS new website for COS developers in China
The Chinese Evidence-based Medicine Center and Cochrane China and Tianjin University of Traditional Chinese Medicine (TUTCM) established the Chinese Research Center for Clinical Trial Core Outcome Sets (ChiCOS). They have just launched a brand new website to provide methodological support to core outcome set developers in China. Visit the website here.
Follow COMET on Twitter:
@COMETinitiative

 
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