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Shared Decision Making Summit 2018









Patients Included Rationale

Below is our rationale for claiming Patients Included. Clauses from the website are listed below, with minor editing to include footnotes in paragrahs.

Clause 1:  

Designing and Planning

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..

How this is fulfilled:
    • The Summit is designed and planned by a Steering Committee.  Four of the members that committee, or approximately a third of its members, are patients and caregivers.
    • These patient advisers were selected in part because of their experience within the healthcare system, including participating in many, many healthcare decision making processes.  Some come with wonderful examples of participating in Shared Decision Making with their providers, others with examples of how it could be done better. 
    • Three of the four patient advisers have participated in the previous SDM Summit in Sep 2016.
Clause 2:

Event Participation

Patients or caregivers with experience of the issues addressed by the event participate (as a speaker, moderator, panelist, workshop leader, or in any other formal capacity) in its delivery, and appear in its physical audience.

How this is fulfilled:
    • All of the patient advisers will be speaking at the Summit.  Some may be facilitating breakout group workshop discussions.
    • The SDM Summit is more of a working group than a conference.  Hence, there is a "team" of participants rather than an "audience."  All four patient advisers will team members, ie equal and active discussion participants, when not speaking.
Clause 3:


Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. A minimum of two scholarships are disbursed, covering registration, travel, and accommodation expenses for two patient or carer delegates in full, in advance. All scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.

How this is fulfilled:
    • All travel and accommodation expenses are paid for in advance of the Summit for all 4 of the patient advisers participating at the meeting.  In some cases, where travel expenses are minimal and it is suggested by the patient/caregiver, they may elect to be reimbursed for travel instead.
    • Additionally, compensation is provided to the patient advisers for their time spent in designing and planning the event as part of the Steering Committee, in addition to compensation for their time spent at and participating in the Summit.
    • Scholarship application inquiries can be sent to
Clause 4:


The disability requirements of participants are accommodated, as far as is practicable for the applying organisation. Examples include: provision of wheelchair access; empty front row for wheelchair users; standing desks; sensory guides; loop systems; video captioning; rest area. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.

How this is fulfilled:
    • The location of the Summit includes features making the site accessible, including wheelchair access, etc. 
    • Each patient/caregiver participating at the Summit will have their accessibility needs elicited and provided for on an individual basis.  This includes travel, accommodation, and meeting participation needs.
Clause 5:

Virtual Participation

Access for virtual participants is facilitated, with free streaming video provided online wherever possible. Video may also be provided pre- and post-event. Other examples of virtual participation include: questions and comments proactively solicited from virtual participants via social media; use of a pre-advertised hashtag; presentations made available for download at no cost.

How this is fulfilled:
    • The hashtag for the Summit is #SDMS18.
    • All slide decks from speakers at the Summit will be shared on the website after the event.
    • It is currently cost-prohibitive to video or live-stream the event.  We are exploring ways to make this happen in the future.

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