The Patients Included conference charter provides conference organisers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited. This page outlines how the Cochrane Colloquium Edinburgh 2018 will meet all five charter criteria.
1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
A range of approaches has been adopted to ensure that patients/consumers have and can continue to be involved in the design and planning of the conference. These include:
- two facilitated workshops in Oxford and Edinburgh (16 and 20 October 2017) aimed at identifying what would make the conference interesting, accessible and inclusive for consumers.
- online survey, linked to two blogs at http://www.evidentlycochrane.net
- an online webinar (16 November 2017)
- two Twitter chats (6 and 7 November 2017) hosted by @CochraneUK, @SarahChapman30 and @RMEngagement #CochraneForAll
- a continuing Patients Included Advisory Group made up entirely from 20 patient/consumer participants in the workshops.
- patient/consumer involvement in committees including the Themes and Content Committee; the Workshop Committee; and the Abstracts Committee.
- All abstracts must state their impact on, or relevance to, patients and healthcare consumers. Submissions that are co-produced, co-presented or co-designed with patients or other healthcare consumers are particularly welcomed.
- All abstracts will be reviewed by at least one patient/consumer reviewer.
- 'Patient or healthcare consumer involvement' is a discrete theme for the submission of abstracts.
- support of the Cochrane Consumer Network Executive, made up of elected representatives from the network of 1700 consumer volunteers
2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
Patients will attend and be active participants in the conference, as follows:
- Explicit encouragement given to workshops, aural presentations and plenaries that are co-presented by patients/consumers and researchers.
- Special reduced patient/consumer rates for attendance.
- Dedicated consumer stipends for a significant number (>10) of patient/consumer attenders with transparent application process, and award decisions made by Stipend Committee drawn from Consumer Network.
- Sponsored places for consumers from a range of sources including Cochrane Centres, Review Groups, and patient-led organisation sponsorship, currently being explored.
- Single day attendance to allow affordable local patient access.
3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
There will be a range of support for patients/consumers to attend including Consumer Stipends, and sponsorship for patients. Application for Consumer Stipends is made using an online process that will be open in March and widely advertised, including on this website.
4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
All applicable sessions at the 2018 Cochrane Colloquium (plenaries, workshops, long and short oral presentations) will be open to all, including patients/consumers.
The Edinburgh Conference Centre is a modern, purpose-built and fully-accessible events venue. The venue has been designed to be inclusive to people of all abilities and the EICC team has received full Equality and Diversity Training. Further information can be found here: http://www.eicc.co.uk/visiting/disability-access/
Suggestions for ways to accommodate disability requirements have been gathered during the consultations with consumers and are being considered in the planning of the event.
5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
Cochrane is an international collaboration of global significance and is committed to extending access to and participation in the conference as widely as possible. Cochrane is working with Beyond the Room (http://beyondtheroom.net/) to make the conference a rich experience, both for those present and for those unable to attend in person, including some or all of the following:
- Live tweeting: opening up the event discussion to as wide and varied an audience as possible; including tweet chats, hashtag registration and analytics.
- Live blogging: evidence-based summaries of research being presented at your event, disseminated via Beyond the Room's major international blogging platform – the National Elf Service.
- Live podcasting: recording short audio interviews with people at the event and sharing them online. These are hosted on a Soundcloud page and added to a podcast feed. The aim here is to give a flavour of the less formal/conversational parts of the event; something people obviously miss if they don’t attend in person.
- Live video streaming: videoing talks, debates and other conference sessions and live streaming them (e.g. on YouTube) so people can watch and join the discussion via Twitter.
You can read more about our plans in these blogs: