Cochrane Review on methods of consumer engagement in health is being updated

That patients, families, their representatives and the broader public (collectively, ‘consumers’) should be actively involved, or engaged, in all levels of healthcare policy, research and services is an idea that has well and truly arrived. Amongst the explosion of literature, standards and guidance documents is a familiar refrain: ‘More evidence of impact, please’. A team of Cochrane reviewers has partnered with a stakeholder advisory group to do just that, by updating an existing Cochrane Review on methods of consumer engagement in health.

The topic was selected as a priority review for the Cochrane Consumers and Communication Group (CCCG) after a comprehensive priority setting activity. Debra Kay, co-author and consumer member, SAHMRI Consumer and Community Advisory Committee, explains, ‘I wanted to be part of this review update because this topic is right at the heart of the questions that consumer groups I work with want answered in order to better influence healthcare at a systemic level. I was also keen to support a respectful and genuine coproduction process between Cochrane reviewers and stakeholders.’

Given the rapid developments in the consumer engagement space since 2009 (when the last update was published), the team elected to work on a new protocol, just published and available here. Lead author, Louise Wiles, University of South Australia, says, ‘our advisory group includes mainly consumer representatives, along with policy makers, health service managers, clinicians and researchers. We first showed them the 2009 update and asked them what they would like to change. After having incorporated their feedback into a draft protocol, we asked for a second round of feedback before finalising the protocol. I’ve been blown away by how much the review direction and approach has changed thanks to stakeholders’ input, from the objectives, terminology, data extraction items and even a commitment to write the entire review in plain language. As a result, we feel so much more confident the review is going to be useful and relevant to the people who might want to use it.’

In another exciting development, the author team and stakeholders have agreed to go under the microscope, and have their engagement approach evaluated by Cochrane Consumers and Communication Group Editor, and PhD student, Annie Synnot. Annie explains, ‘While we have lots of published examples of author teams working together with consumers and other stakeholders on systematic reviews, they are very rarely evaluated. By documenting how stakeholders and authors worked together on this Cochrane Review, and exploring the impact on the people involved, the research process and the systematic review itself, I hope to provide valuable information for future systematic review authors wanting to do something similar’.

With the protocol now published, the author team can start the real work – finding the studies and analysing the results. And in the spirit of engagement, they’d love to get your help! If you know of any randomised controlled trials that assess effects of consumer engagement in health services, policy or research please let us know.

You can find the latest information about the review progress, share any feedback or contact the team here.

Cochrane Pain, Palliative and Supportive Care  (PaPaS)  group addresses the gap in knowledge on chronic  pain in childhood and helps push solutions forward.

On July 12th at the Wellcome Trust in London, UK,  world-leading experts came together to look at evidence, policy and practice in the area of childhood pain.

Clinicians, researchers, funders and policy makers from charities, universities and hospitals discussed the lack of knowledge in this area and shared their collective ambition to increase the quality of evidence in this field.

Professor Christopher Eccleston, Coordinating Editor of the Cochrane Pain, Palliative and Supportive (PaPaS)  Review Group, who initiated the event explained, “Four years ago the Cochrane PaPaS Group promised a programme of systematic reviews on the evidence for interventions for adults with chronic pain (both neuropathic and cancer related) and children with chronic pain. The work was supported by the NIHR. We produced 49 systematic reviews in a three year period, 10 of which for children and adolescents with chronic pain. The principal finding from these ten reviews was a distinct lack of evidence,  with too few trials in this area. The lack of research in this important field is so striking that we wanted to gather a group of influencers together fast  to address this gap in knowledge and think creatively about what the solutions could be.”

Presentations were shared on pain in babies, pharmalogical treatments in chronic pain, pharmalogical treatments for disease related pain and psychological treatments for chronic pain followed by discussions which highlighted the lack of large, high quality trials in this area.

Discussion ranged from concerns about how pain is identified in children to the impact social media is having on expectations and the opportunity smart phones offer to collect data differently.

The initiative led by the Cochrane PaPaS Group was funded by NIHR and backed by partners including the European Pain Federation, Wellcome Trust, and Arthritis Research UK. 

Co-organiser Systematic reviewer and editorial assistant Dr Emma Fisher from the PaPaS Group, explained, “All the attendees are working in some way to mitigate the lack of data in this field, for some it is a daily challenge - treating young patients, knowing they can’t help them as much as they would like. This is a springboard and just the beginning. As an academic collective we will focus on taking our recommendations forward.” 

• Cochrane is in the process of developing new online training and resources to help all Cochrane contributors and Groups learn more and provide practical help in facilitating and promoting the update of evidence in their work.
• If you have examples of your Knowledge Translation work that you would like to share, please contact support@cochrane.org

Re-posted from Cochrane South Africa

Professor Bongani Mayosi, one of the world’s top cardiologist, passed away on 27 July 2018.

Professor Mayosi was a member of the Advisory Board of Cochrane South Africa for many years and served as the chair from 2007 to 2009. He was a strong proponent of the work done by Cochrane and co-authored three Cochrane Reviews. We will always be eternally grateful for his guidance and support. He was an inspiration to us all.

“I am so devastated. Bongani and I have come a long way. He was my connection to Cochrane and to South Africa” says Professor Charles Wiysonge, Director of Cochrane South Africa. “In 2000, Bongani sent me the advert for the fellowship that led me to Cochrane, and in 2004 he convinced me to relocate from Cameroon to South Africa”, he added.

In 2006‚ at the age of 38‚ Professor Mayosi became the first black person to be made Professor and Head of the Department of Medicine at Groote Schuur Hospital and the University of Cape Town. “We work where angels fear to tread‚” he said of the type of research he and his colleagues tackled.

Professor Mayosi received many awards and honours during his distinguished career. In 2009 he was awarded the South African highest honour, the Order of Mapungubwe (Silver); he was elected to the Fellowship of the World Academy of Arts and Science (2013); he received the National Research Foundation Award for Transforming the Science Cohort in South Africa (2011). Since 2011 he had been advising the South African Minister of Health on the policy and strategy for health research in his capacity as the National Health Research Committee chair. Last year he was elected to the National Academy of Medicine in the US, the only African on the highly prestigious list. Professor Mayosi published over 300 peer-reviewed academic articles individually and collectively. He was part of the team which discovered one of the genes responsible for causing the life threatening heart disease arrhythmogenic right ventricular dysplasia, this discovery was regarded as one of the most important medical advances in South Africa since the first human heart transplantation. Apart from being world famous for his gene discovery‚ he was also highly regarded for his work on preventing rheumatic fever and on tuberculosis of the heart. He led a groundbreaking series of multinational research studies into the management of pericarditis‚ including an African trial of the use of steroids in treating tuberculous pericarditis.  These are just a few of his many achievements.

For the past two years Professor Mayosi was Dean of the Health Sciences Faculty at the University of Cape Town. He was much loved and respected by his students, fellow researchers and peers. He worked tirelessly to improve the health of people in low and middle-income countries.

The Cochrane Community will miss Professor Mayosi dearly.

• Visit the Cochrane South Africa website

Leading institutions, including Cochrane, sign on to international platform which aims to accelerate medical research

The nonprofit organization Vivli launched a novel data-sharing and analytics platform to help researchers move faster toward new treatments and cures. This innovative platform makes it easy for researchers worldwide to discover, share and analyze data from clinical trials, regardless of who sponsored the research or where the research took place.

The Vivli platform launches at a crucial time in the evolution of science. Increasingly, researchers are being required to make their data openly available. New guidelines issued this month by the International Committee of Medical Journal Editors demand that researchers share the data underlying their published results. Government and non-profit research funders are stipulating data-sharing as a condition of their grants. The culture within industry is also shifting to reward more open sharing of data. The Vivli platform boosts these emergent data-sharing efforts by bringing data from all clinical trials together in one place.

“To this day, much of the world’s clinical trial data is not shared, and even when it is shared, it is not integrated across the entire clinical research ecosystem,” said Vivli’s Executive Director Rebecca Li, PhD. “Vivli acts as bridge, enabling researchers of every stripe across the world to build upon each other’s work and speed up science.”

Vivli provides researchers with a secure, easy-to-use online platform to store and share clinical trial data across all diseases, nations and research entities. Vivli also allows researchers to freely combine and analyze data from multiple trials using state of the art tools. This means researchers can validate research findings—from confirming a treatment’s safety to identifying side effects—and avoid duplicative studies, thus reducing costs and shielding research participants from unnecessary risks. The data can also be combined to ask new research questions, such as how a disease evolves over time, and gain information to inform the design of future studies.

Vivli evolved from a project at the Harvard policy center, The Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital to enhance access to clinical trials data. For five years, a group of volunteers embarked on a mission to define, design and launch a global solution for sharing clinical trial data. “Sharing clinical trial data is critical in order to move science forward. We owe nothing less to the people who put themselves at risk by participating in these studies that benefit us all,” said Li.

The Vivli platform was built with grants from the Doris Duke Charitable Foundation, the Laura and John Arnold Foundation and the Leona M. and Harry B. Helmsley Charitable Trust. The platform is powered by Microsoft.

About Vivli

Vivli is a non-profit organization working to advance human health through the insights and discoveries gained by sharing and analyzing data. It is home to an independent global data-sharing and analytics platform which serves all elements of the international research community. The platform includes a data repository, in-depth search engine and cloud-based analytics, and harmonizes governance, policy and processes to make sharing data easier. Vivli acts as a neutral broker between data contributor and data user and the wider data sharing community. For more information, visit www.vivli.org and follow us on Twitter @VivliCenter.

Dear Cochrane Community colleagues,

I am delighted to inform you that the redesigned and enhanced Cochrane Library will launch on Tuesday, 7 August 2018.

Our colleagues at Wiley are communicating this news direct to customers separately and have also contacted users who have saved searches.

To ensure the transition process to the new publishing platform runs smoothly, we strongly recommend not using the saved search function from 00:01 GMT on Monday 6th August 2018 until 23:59 GMT on Tuesday 7th August.  Changes saved during this period may not be transferred to the new site. During this period all other search function in the Cochrane Library will remain available. All previously saved searches will be transferred onto the new search platform with no action required on the part of users and customers.

All aspects of the Cochrane Library have been redesigned to improve the Cochrane Library user experience including:

• Improved article design for Cochrane Reviews, CENTRAL records, and all content.
• Search expanded across all content types, including Cochrane Reviews and Protocols, CENTRAL, Editorials, Special Collections, Cochrane Clinical Answers, and other systematic reviews from Epistemonikos, via a new federated search feature.
• A new Spanish language portal and discoverability of translated content in multiple languages via basic search.
• Cochrane Clinical Answers now fully integrated into the Cochrane Library.
• Improved search results display, including new filters for all content, and multiple record export options.
• Advanced search tabs better integrated, and MeSH search feature improved.
• Linking CENTRAL records to Cochrane Reviews.
• Easy navigation from Cochrane Reviews to related podcasts, Editorials, and Cochrane Clinical Answers.

We will announce full details of launch to Cochrane Members, users, and stakeholders on Wednesday 8th August via external communications together with Wiley and our technology platform provider, HighWire.

If you have any queries or concerns about anything else, please contact Wiley customer support team (cs-cochrane@wiley.com).

I am delighted to share this exciting news with you today. This complex project has been all about improving user experience; we have ambitious plans for future development of the Cochrane Library and these can only be delivered by this move to a new publishing platform.

With best wishes,

David Tovey
Editor in Chief

Dear Cochrane Members,

Voting is open for two Cochrane elections:

• Election of a Governing Board member
• Election of an Author representative to the Cochrane Council

Visit elections.cochrane.org to view the candidates standing and cast your votes.

To allow for additional time to resolve queries related to voters’ membership status, the voting deadline for both current elections has been extended by one day to the end of the day in any timezone on Monday 6 August. Results will still be announced as planned on Tuesday 7 August 2018.

Cochrane Crowd is an online citizen science platform that enables anyone with an interest in health to contribute to health evidence. Our volunteers make it easier for health researchers to find the latest, high-quality evidence on what treatments work and don’t work. This means health practitioners can more easily access current evidence to inform the treatments they provide. Just a few minutes each day makes a huge difference.

This webinar introduces Cochrane Crowd and how you can get involved.

Wednesday 22nd August 1-2pm BST

crowd.cochrane.org

Support for Project Transform was provided by Cochrane and the National Health and Medical Research Council of Australia (APP1114605). The contents of the published material are solely the responsibility of the Administering Institution, a Participating Institution or individual authors and do not reflect the views of the NHMRC.

The Pan African Clinical Trial Registry (PACTR) has been redeveloped with the aim of providing a more user-friendly, easy-to-navigate website for researchers, policymakers, funders and the public. PACTR is a regional clinical trials registry which aims to serve the needs of African clinical trials, clinicians and trial participants.

The revised database is available at www.pactr.org.

Some of the improved features include:

• Easy navigation
• An easy-to-search GIS map showing clinical trial locations by subject
• Optimised search functions with easy-to-download formats

PACTR is the only African WHO-endorsed primary registry of clinical trials conducted in Africa. It is open-access and trials are registered free of charge. PACTR was originally developed in 2006 with a focus on AIDS, Tuberculosis and Malaria.  In 2009 it was expanded to include all conditions and renamed PACTR. PACTR is based at the South African Medical Research Council and is managed by Cochrane South Africa with initial funding from the European and Developing Countries Clinical Trials Partnership (EDCTP).

“The overall aim is to increase transparency by promoting clinical trial registration and also to provide a consolidated platform to search for information on clinical trials,” said Tamara Kredo, Deputy Director of Cochrane SA. “PACTR aims to assist in the regulation, registration and ethical oversight of clinical trials in Africa.”

“PACTR is increasingly becoming the registry of choice for African trials and recently registered the 1500th trial,” said Elizabeth Pienaar, PACTR Project Manager.

“PACTR is unique in recognising that African trialists often face additional challenges in trial registration and seeks to provide ways of overcoming these. For example, a common problem in sub-Saharan Africa is limited, unreliable and costly internet access. With this in mind, the registry provides manual registration for those without reliable internet access,” said Pienaar. “These features are included and updated in the new version.”

Feedback on the website and its new features is welcomed at pactradmin@mrc.ac.za or elizabeth.pienaar@mrc.ac.za

Michelle Galloway
Cochrane SA

Five candidates are standing for election to the Governing Board this year:

• CULLUM, Nicky           
• EKE, Ahizechukwu      
• GUPTA, Deepak          
• HOOFT, Lotty  
• JEFFERSON, Tom

Read more about why they’re standing and what they propose to do for Cochrane in their Candidate Statements on elections.cochrane.org.

There is one position available on the Board for this election. If you’re a Cochrane Member you’ll be entitled to vote for your preferred candidate and you’ll receive instructions on voting opening day, 24 July 2018. If you are unsure whether you are a Cochrane Member, please contact membership@cochrane.org.

Best wishes to all candidates standing!

Nine candidates are standing for election to the Cochrane Council as Author Representative:

• CIAPPONI, Agustin
• CLAY, Fiona
• DAVIES, Mark
• DEL GIOVANE, Cinzia
• FRANCO, Juan V.A.
• HODDER, Rebecca Kate
• JORDAN, Vanessa
• MARTIS, Ruth
• PETSKY, Helen

Read more about why they’re standing in their Candidate Statements on elections.cochrane.org.

There is one position available on the Council for this election. If you’re a Cochrane Member and Author you’ll be entitled to vote for your preferred candidate and you’ll receive instructions on voting opening day, 24 July 2018. If you are unsure whether you are a Cochrane Member, please contact membership@cochrane.org.

Best wishes to all candidates standing!