Since 1995, Cochrane’s Consumer Network Executive has provided governance and leadership for the international community of consumers (patients, care-givers, family members and others) who volunteer to help produce and spread Cochrane evidence (1556 and growing, in April 2019). The Executive also represents the consumer voice in other areas of Cochrane, including two members of Cochrane’s Council.

Nominations were invited in early 2019 to fill vacant positions on the Consumer Executive (CE) and applications closed on 29th March 2019. In recognition of the increasing need for representation on Cochrane bodies, and the opportunities ahead for consumer involvement, the decision was taken to increase the size of the CE to six consumer members.

I am delighted to announce that the following new people have been appointed to the Executive for a period of three years:

• Helen Bulbeck
• Rachel Plachcinski
• Maureen Smith

Joy Oliver, who fills a position reserved for someone from a Low- and Middle-Income Country, was re-appointed for a second term of three years.

Continuing members are Sara Yaron and Nancy Fitton. You can read more about the members of the CE here https://consumers.cochrane.org/whos-who.

Anne Lyddiatt, our current CE chair, will this year be ending her distinguished term of service on the Executive.

Key issues ahead for the CE include extending Cochrane’s engagement and involvement around the world; how we better support consumers, especially in peer review; and planning for a post 2020 strategy that embeds consumer involvement in Cochrane.

Meet our new members

Dr Helen Bulbeck

Helen has experienced cancer from a carer’s perspective and also as a cancer patient. She uses the experience of being a patient, relative, member of the public and a carer to support 1000s of patients who have brain cancer. This 360-degree view means that she is well placed to understand the perspectives of patients, caregivers and health care professionals.

Her roles in brainstrust, a national brain cancer charity which she founded, and as a consumer representative with various bodies are as a disseminator of information and the provision of a network and community, so that she can provide advice on achieving effective consumer involvement and creating a voice. Helen’s key drivers are the patients, their carers and healthcare professionals, with whom she interacts daily. Her ethos of 'none of us is as smart as all of us' is a core value for her.

Elemental to Helen’s work is high performance coaching. This sets brainstrust apart. When we are no longer able to change a situation, we are challenged to change ourselves. The coaching relationship enables people to face these challenges, so that they learn how to develop resilience and utilise resources to their full potential.

Helen stays up to date with relevant research, ensuring her reading is not brain centric. The skills she developed whilst studying for her PhD means that she is tenacious in spirit, but with a listening ear.

You can contact Helen at helen@brainstrust.org.uk

Rachel Plachcinski

 
Rachel came to the Cochrane community and the Pregnancy and Childbirth Group via her involvement with NCT, a UK charity supporting parents through pregnancy, birth and early parenthood, which she joined after the birth of her first son. She really appreciated NCT's commitment to information, evidence-based care and peer support, and went on to train as one of their practitioners, delivering antenatal courses for 18 years.

Rachel went to university when her third son started school, completing a BSc in psychology followed by an MSc in Psychological Approaches to Health. She is also a Critical Appraisal Skills Programme (CASP) trainer and has run many Journal Club sessions for consumers, using a variety of media. Rachel has represented parents on several major trials in maternity research, and now co-ordinates research collaborations for NCT as well as being joint lead for parent, patient and public involvement at the National Perinatal and Epidemiology Unit (NPEU) at the University of Oxford and a member of the Public Advisory Board for Health Data Research UK. She regularly comments on PCG reviews, is learning how to be a Cochrane author and is working with the PCG team on plans to recruit and support more consumers, especially those from low and middle income countries.

Maureen Smith
 

Maureen Smith, M.Ed. (Psychopédagogie) has a long history of collaboration with the medical community subsequent to a rare disease diagnosis in childhood. She joined the Cochrane Consumer Network in 2015 but her interest in evidence-based medicine dates back to 2000 when she began serving on various Canadian federal and provincial committees as a patient or public member.

Beyond providing peer-review comments for Cochrane Musculoskeletal, Maureen is involved in several Cochrane projects such as Decision coaching for people making health care decisions, two MuSE projects (Barriers and facilitators to multi-stakeholder engagement in guideline development and Impact of multi-stakeholder engagement in guideline development), and Replication of systematic reviews.

Maureen has participated in two Rapid Rec reviews. She is a member of the Ontario Strategy for Patient-Oriented Research Unit’s Patient Partners Working Group, the Institut du Savoir Montfort’s Steering Committee on the collaborative research approach, the Board of Directors of the Canadian Organization for Rare Disorders, and the Patient-Centred Outcomes Research Institute’s (PCORI) Rare Disease Advisory Panel. Maureen has a fervent belief in the importance of evidence-based medicine as she is a patient member on Ontario’s Committee to Evaluate Drugs since 2014 and the Ontario Health Technology Advisory Committee since November 2016.

For more information go to https://consumers.cochrane.org/, follow us on Twitter at @cochraneconsumr, and Facebook or email Richard Morley, the Consumer Engagement Officer at rmorley@cochrane.org