Cochrane for all: making the Colloquium a 'Patients Included' event

Richard Morley (Cochrane Consumer Coordinator), Martin Burton (Director, Cochrane UK) and Sarah Chapman (Knowledge Broker, Cochrane UK) outline the plans for making the Colloquium a Patients Included event:

Over the past 20 years Cochrane has helped transform the way health decisions are made. Cochrane produce systematic reviews of primary research in human health care and health policy. They are internationally recognized for their quality, occupying a position at the highest level of healthcare evidence. Cochrane evidence is produced and disseminated by an amazing global network, including 37,000 volunteer collaborators – patients, care-givers, researchers and healthcare professionals – bound together by a shared vision for better health. 

Whether you’re a researcher, healthcare professional, patient, carer, or just passionate about health, the Cochrane community welcomes you. Recent initiatives such as Cochrane Crowd, Task Exchange and the new Cochrane Membership Scheme are expanding the opportunities to participate in Cochrane’s work. 

Now we have another opportunity. Cochrane UK is organizing the next Cochrane Colloquium, our annual conference, to be held in Edinburgh in September 2018. The theme will be ‘Cochrane for all – better evidence for better health decisions’ and we want this to be an important step in increasing the involvement of patients, carers and family members (healthcare consumers) in our work. 

Making a start

We began with two meetings, in Oxford and Edinburgh where we discussed how to make our conference a ‘Patients Included' event. For practical reasons, we sought people for these from the geographical regions of the Thames Valley and Edinburgh.

There was also the opportunity to participate in two webinars, which aimed to replicate, as far as possible, the face-to-face meetings. We also invited discussion and suggestions through a tweetchat and through a survey. 

We've been overwhelmed by the number of thoughtful suggestions we've received for making the event as inclusive, engaging and interesting as possible. We're busy collating all suggestions and will be providing details of these - and how we intend to act on them - shortly. 

Here’s what some of the Cochrane and wider community say about making our conference a Patients Included event…

Amy Price (@AmyPricePhD), leads the PLOT-IT (Public Led Online Trials-Infrastructure and Tools) at ThinkWell:   

Cochrane is a leader in research outreach with Task Exchange, Cochrane Crowd and through internet sites that bring to life complex research results with Visually Cochrane and Evidently Cochrane. The next step is Patients Included conferences where health care consumers and world leading researchers meet for innovation, problem solving and design co-construction. The time is ripe to reason together for effective advocacy that goes beyond the patients sharing experiences and writing plain language summaries to the real power shift of co-created research that changes clinical practice and delivers effective community changing outcomes.  

“The  public is the sensor that powers influence. They build evidence into practice.”  (Amy Price 2013) 

Wendy Mitchell (@WendyPMitchell), blogger and patient participant in research, sharing her experiences as someone with young onset dementia:

Including patients in everything you do is the only way to ensure a better patient experience. As people with dementia are forever saying, “Nothing about us without us” – which seems to sum it up nicely. 

Marie Ennis-O’Connor (@JBBC), digital engagement strategist, Stanford Medicine X e-Patient scholar, Trustee of the Patient Empowerment Foundation:

Healthcare today is a profoundly mutual enterprise with health expertise residing outside as much as inside medical circles.  Patients are increasingly demanding better evidence, better presented, better explained, and applied in a more personalised way. Healthcare needs to reshape itself around a new paradigm of patients and their care-givers who are better informed, motivated, and engaged in their healthcare and eager to bring their experience and expertise to designing better care.  

Annette Dancer, living with dysarthria after stroke, patient participant in research:

As a person who has had a life-changing stroke, I welcome any provision which encourages patient involvement in the development of research and health care.  

Michael Seres (@mjseres), Founder 11Health, EPatient advisor Stanford MedicineX, Crohn’s bowel transplant and cancer patient:

I am absolutely delighted that Cochrane has taken the bold and brave decision to co-design, create and deliver an event with patients right at the centre. This opportunity to contribute as an equal where at the heart is an initiative based on mutual respect, empathy and trust is really inspiring. As a Patients Included event I very much hope this will act as a catalyst to change the healthcare dynamic where patients really are part of the future of healthcare. 

Sally Crowe, Cochrane Consumer and Member of Prioritization Methods Group:

I really welcome the plans to make the Edinburgh Cochrane Colloquium a #patientsincluded event.  I have no doubt that an increase in participation by more diverse patients and the public in designing and participating in the Edinburgh meeting will take it in new directions and create broader spaces for discussion, comment and learning.  My experiences of #patientsincluded events have been very positive with thoughtful, surprising and sometimes challenging discussions, in the spirit of collaboration and mutual respect. 

Anne Lydiatt, Chair, Cochrane Consumer Network:

The timing of this opportunity is perfect – all parties involved (consumers, researchers, funders, policymakers) have, over the past few years, recognized the benefits an approach such as this brings to all concerned. Not to say there won’t be challenges, but this is a golden, global opportunity – for all. 

Alan Smyth, Professor of Child Health, University of Nottingham:

In cystic fibrosis, the patient and clinical community are working together to decide on the top priorities for clinical research, to co-produce research protocols and to get the research done. “Cochrane for all” (Edinburgh 2018) will be an important milestone on the path to shared decision making in health, where health professionals and patients strive to make the right decisions together, guided by the best evidence. 

Irena Zakarija-Grkovic, Co-Director, Cochrane Croatia:

I love the idea of healthcare consumers co-designing, co-producing and co-presenting the 2018 Cochrane Colloquium. What a wonderful opportunity to learn from each other and make it a fruitful event for all. A challenge we will have to face in the process is how to include healthcare consumers from non-English speaking countries in a meaningful way, enabling their voices to be heard as well. To the list of topics above I would venture to add communicating with healthcare consumers (a patient-led workshop), patient important outcomes, as well as a whole plethora of workshops for healthcare consumers on finding/reading/applying reliable evidence. I’m sure this event will enhance Cochrane’s reputation as a consumer-oriented organisation, and lead to improved healthcare. Well done Cochrane for taking up this exciting challenge!

Catherine Marshall, Cochrane Board Member:

Come and join us – help us to spread the word … evidence based health information such as Cochrane reviews are developed to inform people making decisions about their health. We welcome active consumer involvement in all Cochrane activities so that health information can be designed in a way that it is easy to find, covers the most important topics, is easy to use – and reliable. 

Alex Pollock, Cochrane author at The Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University:

We believe that patient and public involvement is essential to all our research, including our systematic reviews, but we find that there can be real challenges faced by researchers when it comes to involving patients and carers in a meaningful way.  We want to learn about practical steps that we can take to ensure that we create the best possible opportunities for involvement which can impact positively on the relevance and value of our research.  This Colloquium will be a fantastic opportunity to do this, and we look forward to coming, sharing our experiences of involving people in our systematic reviews and learning from others.

This is an amended version of a blog originally published on Evidently Cochrane, a blog run by Cochrane UK.