Here’s how we’re meeting the Patients Included Charter Criteria for conferences:
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.
The central theme for all of the BC SUPPORT Unit’s annual conferences is “Putting Patients First.” Our second conference in October 2018 will focus on “lessons learned.” Both the central theme and this year’s sub-theme are relevant to the focus of patient-oriented research. Patient partners participate as equal members of the planning committee (which also includes researchers, health care providers, and decision makers). Patient partners are present for monthly planning meetings with options of participating remotely or in-person. The planning committee uses a virtual platform to enable asynchronous discussion between members. With respect to planning so far, the committee has selected the date and keynote speakers, together – established through discussion, posts on the online forum and an anonymous polling process. Subsequent discussions will focus on selecting topics and speakers for the breakout sessions.
2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
The committee has selected two keynotes (morning and afternoon). The opening keynote is a patient-researcher dyad. The afternoon keynote is the National Institute for Health Research’s (NIHR) National Director for Patients and the Public in Research in 2012. The intent for the breakout sessions is to ensure that patient partners are either presenting independently or in conjunction with speakers representing other stakeholder groups (researchers, clinicians & decision-makers). There will be some content specific for patient partners but all participants will be welcome to attend any session. With respect to the conference’s physical audience, patients are a key target audience. At our conference last year, patients represented approximately 20% of attendees.
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 is no registration fee for the conference, ensuring that the event is financially accessible to all stakeholders. Travel, accommodation and per diem for food is provided for a number of patient partner attendees. The reimbursement for these costs is provided via submission of original receipts and invoices following the conference date; however, the availability of reimbursement is announced before the conference date. Some Regional Centres of the Unit work with patient partners located in places where travel is required to book their travel for them or to provide travel advances to patient partners.
4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
The venue for the event was selected in conjunction with patient partners to ensure maximum accessibility. Visits to sites was undertaken with patients who have mobility issues. Older facilities that were constructed using outdated accessibility standards were discounted in preference for a newer facility (in a central location with multiple accessibility) built using the latest standards. The final decision for the venue was based more on issues related to accessibility of the site than to those related to the cost of the venue. There is elevator access to a single floor of rooms for both keynote and breakout sessions. Washroom facilities are also on the same floor directly to the conference rooms, and are also accessible to those with mobility limitations. Accessibility to food and refreshments is also designed to ensure equal convenience for all attendees.
5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
The planning committee is investigating options that would permit for at least some of the sessions to be attended virtually. These options include live streaming (Facebook Live – as this was used successfully for last year’s event) in addition to the monitored Twitter feed (#PPF18). Other options being explored are to upload video recordings on the BC SUPPORT Unit’s YouTube channel, and to use an archiving platform to record the online conversation (via Storify).