What can we change through social media? Learning from sharing experience and evidence on sexual problems

Session: 

Oral session: Knowledge translation and communicating evidence (6)

Date: 

Monday 17 September 2018 - 14:40 to 14:50

Location: 

Pentland Auditorium

All authors in correct order:

Chapman S1, Ryan-Vig S1
1 Cochrane UK, UK
Presenting author and contact person

Presenting author:

Sarah Chapman

Contact person:

Sarah Chapman
Selena Ryan-Vig
Abstract text
Presentation aims: 1) share our learning with others who may wish to run social media campaigns integrating research evidence and experience; 2) highlight opportunities for patients and other healthcare consumers to get involved with such campaigns.
Background: Cochrane UK uses social media to make health evidence accessible and useful for a wide range of people making health decisions. A social media campaign on sexual problems relating to health conditions presented particular challenges.
Objectives: Cochrane Reviews on health-related sexual problems reveal a lack of high quality evidence. We wanted to explore what might be holding back research in this area and what could bring about change. We hoped to engage health professionals, researchers and people experiencing sexual problems.
Methods: Over a month, we shared eight blogs on Cochrane evidence and other research, with reflections from practitioners and researchers. We engaged in discussion online, including a multi-disciplinary tweetchat. We monitored impact and gathered information that could inform future campaigns.
Results: We successfully shared work from several Cochrane Review Groups and other research, connected with a wide audience and encouraged discussion of a sensitive topic. There was a very positive response on social media. People welcomed the discussion and information and shared it elsewhere, for example a regular contributor to an online cervical cancer support group. We were unable to get a blog written by someone with sexual problems, but heard experiences and opinions through comments on social media and through the writings of researchers and health professionals. The campaign led to a London hospital updating its information for patients, and to the inclusion of quotes from the blogs, with links, in material for a Maggie's Centre course for people with cancer and their partners. We had mixed success with engaging other organisations, such as charities.
Conclusions: The campaign demonstrated the possibilities of social media for sharing evidence and experience, even where evidence is poor and the topic 'difficult'; for engaging people, and for prompting improvements in practice.
Patient or healthcare consumer involvement: blogs highlighted consumer involvement in priority setting and research and patient stories; consumers engaged with us and the resources on social media.

Relevance to patients and consumers: 

We use social media to share Cochrane evidence in formats that are quick and easy to read and understand, and often alongside patient stories and reflections on the evidence. Our social media campaign 'The Problem With Sex', shows how this can work in practice, and what can be achieved. As well as raising awareness of research in this area, and the importance of listening to patients, this campaign succeeded in encouraging discussion about a taboo subject and resulted in changes in practice. We hope it will inspire consumers to get involved with such campaigns and engage through social media.