Patient engagement

In 2016 the Cochrane Heart Group embarked on a patient engagement exercise, with a focus on consumer needs. The aim was to get ideas for new review questions on the prevention and treatment of heart problems and to refine existing reviews to make them more relevant, by identifying patient-relevant outcomes. These ideas would come from a range of consumers;  including patients, carers, interested members of the public, clinicians and researchers.

We decided that the World Heart Day, organized by the World Heart Federation (WHF), would be a fantastic, wide-reaching point to launch our campaign; Power your life - Ask questions. We approached the WHF with our ideas and found they were very supportive, allowing us to use their branding to help promote our campaign. Following the launch on World Heart Day, the campaign was re-branded to Your heart – Your questions and was open until the end of the year.

The campaign was based around one simple question which we asked through an online questionnaire; What do you want to know about preventing and treating heart problems? The aim was to keep the question jargon-free and although guidance was available on how to frame a question for those who wanted to go a little further, essentially respondents were free to ask their own questions about preventing and treating heart problems in their own words.

We disseminated our question through our website and through a Twitter campaign (#askcochraneheart) which was supported by multiple organizations including National Institute for Health Research (NIHR UK), UCL Institute of Health Informatics, the Farr Institute, British Heart Foundation, Pumping Marvellous - The heart failure charity, and of course the World Heart Federation.

We also received plenty of support from Cochrane groups both in the UK and internationally, with our campaign featuring on websites, Facebook pages, in newsletters and on Twitter feeds in various languages! The campaign was also featured on the Cochrane community blog.

By the end of the campaign, we have received 18 questions in total and thanks to the help of some international Cochrane groups translating the question, we have received questions in English, Japanese, German and Spanish.

We are grateful for all responses - eight were from patients, seven from clinicians, two from people with a general interest in cardiovascular disease and one from a guideline maker. Half of the questions provided or could easily be translated into a PICO format (Participants, Interventions, Comparator, Outcomes).