From #PatientsIncluded to Patient in 12 hours – my #BeyondTheRoom experience at the Cochrane Colloquium, 2018

Sally Crowe participated in our recent conference, the Cochrane Colloquium, as a member of the #BeyondTheRoom team, helping facilitate a wider and more democratic conversation via social media. In this blog, she reflects on the experience.

The morning after…

The day after the 2018 Cochrane Colloquium I was in hospital for tests – ironically it proved to be a good setting to reflect on my experience of being part of the #BeyondTheRoom team for #CochraneForAll, in the first year the conference was #PatientsIncluded.  Not only did I have a lot of time on my hands (!) but being in a healthcare setting brought a sharp focus to the thoughts and experiences I had carried home from Edinburgh.

I joined Twitter in 2013, when my colleague Katherine Cowan (who had the foresight to set up the @Lindalliance account) encouraged me to step into Twitter. She said “I think people might be interested in what you have to say”; flattering, but as someone who works ‘outside’ the healthcare system I was very interested in who I might meet, and what I might find on Twitter.  And so, it turned out to be, an explosion of patient networks, blogs and accounts of ‘getting involved’ in research.  Many patients have found Twitter because they can’t access meetings, conferences and places where decisions often get made, but can share their perspectives, ideas and frustrations and I think increasingly influence what happens.  So, I was an enthusiastic applicant to the selection process for #BeyondTheRoom at the Cochrane Colloquium where core conference messages and themes could be shared more widely, but also conversations could be initiated to bring in views and information that added to, challenged or corroborated what happens at a conference.

I found the experience exhilarating, exhausting, slight scary and a privilege to work with such a brilliant team.  There are 3 particular insights I wanted to share in this blog – I hope that they may generate subsequent comments and feedback.

Taking the microphone

The first is deeply personal.  My work in public involvement in research stems from first hand situations where voices have not been heard, so when Cochrane UK decided to balance ‘in the room microphones’ with online questions to speakers (via Twitter, the conference App and via Menti.com) I did a little fist pump!  I struggle to ask questions in conference arenas, and I am not alone.  Too often those people who are entirely used to and confident in taking that public space – take it and don’t use that privileged opportunity to explore the presentation further, but instead share their expertise, sometimes even patronizing the speaker.

We encouraged people to submit questions for the speakers electronically, via Twitter, the conference app, and menti.com, an alternative to questions via a microphone

Clearly the process of selecting questions should reflect the themes in social media during the presentation, would be subject to some selection bias but be interesting to the audience as a whole. I’m not sure we always got this right but we had mostly short, punchy questions for speakers to respond to, from we hope a more diverse audience.

@DerekCStewartI am liking the experience of ‘being #Outsidetheroom’ – very inclusive atmosphere via Twitter

Questions from Twitter included these:

A question from The Mental Elf @Mental_Elf for @jenjohannesen: How can we shift the research and service development agenda away from the current #PatientEngagement enterprise, towards a new model that is built on the “collective first hand knowledge” of patients, survivors and carers? #CochraneForAll

Question for @DrGregorSmith from @DrJoMorrison1: It often takes longer to not do something rather than to do something in medicine. How can we give enough time to clinicians to have richer and more nuanced conversations?

Question for Ruth Elwood Martin and Mo Korchinski from @VanessaLGarrity: In what ways do you think that creativity is healing and transformative?

Correct and incorrect hashtags

The second insight was one that crept up on me and concerns the #CochraneForAll hashtag used throughout the conference.  Hashtags are crucial to tag and track online conference content.  Despite some attempts to subvert it, the hashtag proved to be an effective way for everyone to see everything.  My final tweets were done on the train platform as I left Edinburgh, I was tired and using my phone, rather than my larger tablet.  Too late realised I had used #CochaneForAll, with no ‘r’ in Cochrane (however I can think of worse consonants to drop in my area of Public Involvement!). I deleted the tweet, but not soon enough for it have made a Twitter impression and be picked up by other conference participants. Some tweeted their frustration and gave tongue in cheek reasons for this occurrence.

@AndrewB007hMisspelled #CochaneForAll already has 160 tweets. Phonetically that makes 10% of attendees as substance impaired or one heavy user. #CochraneForAll

Then something interesting happened – a public contributor tweeted a thank you for the interesting threads on the correct andincorrect hashtag.  They then followed up with a software theory about why it might have happened, and how it can be related to ‘lost audit data’ – who knew? This summed up the spirit of #BeyondTheRoom, embracing the mistakes, celebrating the openness, and carrying on the learning and dialogue between each other.

@YorkLawLondon: Also thanks to all of the interesting #CochaneForAll tweets. Well done #CochraneForAll @cochranecollab @CochraneUK Actually it’s quite an interesting ,unintentional, error, probable due to software suggesting a well used #Hashtag. It can also happen with NHS procedure codes, which results in incorrectly coded procedures that then escape audit & a large amount of actual data is lost but exists.

woman on phone

We embraced the mistakes, celebrated the openness and carried on the learning and dialogue between each other

The problem with public involvement

My final insight relates to the current status of patient engagement in health research institutions. Jennifer Johannsen, a plenary speaker for Day 3 has blogged and written about her unease about the way institutional patient involvement (in Canada and elsewhere) has been developing.  Whilst I don’t work in an institution I have worked for them in the UK and elsewhere, facilitating and enabling dialogue between patients, the public, researchers and health professionals, in other words I’m a ‘public involvement professional’.  I also contribute voluntarily to research in a personal capacity but I am still part of the patient engagement industry that Jennifer describes.

I knew that this would be a hard listen, and it was.  It was also a thoughtful and elegant critique delivered in a calm way that I think Jennifer knew would help us hear her words and consider them carefully. As she progressed through her points some I disagreed with, others resonated strongly and I reflected on my reluctance to discuss them openly.  This is what a conference should be about – challenge not complicity. There was a torrent of #BeyondTheRoom and #CochraneForAll social media activity suggesting that her presentation had hit a nerve with those in, and beyond the room.  This podcast has the highlights https://soundcloud.com/national-elf-service/jennifer-johannesen-the-problem-with-patient-engagement

@JoannLeeding: Thank you for everyone’s contributions. The sesion with @jenjohannesen#cochraneforallresonated so much with me. I’ve been involved in the past in tokenisitc involvement and I don’t want to do that anymore. It is not respectful to patients. More scrutiny and rigour is needed.

In that hospital waiting room I scrolled through some of the feedback such as that from Joann Leeding I realized that Jennifer’s’ presentation will change my public involvement practice for ever – and I am glad for it.  Thank-you Cochrane for the opportunity.

Join in the conversation on Twitter with @sally_crowe and @CochraneUK or leave a comment on the blog.

Related Post


Sally Crowe

About Sally Crowe

view all posts

Sally is a Director at Crowe Associates Ltd, which provides consultancy, facilitation, training and project management for public involvement in health services and research. She is a member of the Cochrane Prioritization Methods Group with a particular interest in involving consumers, and active in the Cochrane Consumer Network. Sally is a member of the UK Medical Research Council Ethics Regulation and Public Involvement Committee, the British Medical Journal's Patient Panel, and Editorial Board of BioMed Central's Research Involvement and Engagement Journal. Sally has been in the Critical Appraisal Skills Programme (CASP) team for over 20 years helping a wide range of people gain skills in understanding clinical research, and has published a British Medical Journal/Wiley Blackwell Patient and Public Involvement Toolkit.

1 Comments on this post

  1. Thanks for this great blog Sally. I loved being part of the #BeyondTheRoom team at the #CochraneForAll event in Edinburgh. I’ve been covering mental health events for 2 years in this kind of way and it’s been an extremely rewarding part of my work. In mental health my #BeyondTheRoom role has a special meaning because I am often the conduit through which conversation travels between the academics/clinicians in the room and the survivors/citizens following online (lots of interesting power dynamics going on there). Mental health events are often still quite “siloed” with rooms full of psychiatrists OR psychologists OR nurses etc. There are of course lots of properly co-produced events too, and these are brilliant for live tweeting because the audience in the room is mirrored by those online.

    It was really positive to see Cochrane recognising that they need to up their game when it comes to being more #PatientsIncluded. This is the first step in what I think will be a long and sometimes very challenging journey. For me, some of the most perceptive suggestions on our live audio podcast came from the Rosamund Snow prize winners, Emma Cartwright and Jess Rees who stressed “It would be amazing to see @cochranecollab take it a step further & have patients talking about their own experiences, not just researchers / health professionals talking about patient experiences”: https://soundcloud.com/national-elf-service/emma-cartwright-jess-rees-1?in=national-elf-service/sets/cochrane-for-all

    Let’s drive this #PatientsIncluded agenda together!

    Cheers, André

    André Tomlin / Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

*

UA-49496932-1