Self-assessment

Here is our status on each of the criteria on the #PI conference charter page

Criterion

Status

1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event

Yes.

All members of our Society have been invited to participate.
The conference’s theme is “Transforming the Culture of Care” - as the conference page says, “The era of patient-provider collaboration is materializing and transforming the culture of care. Culture change takes a generation, but the work is bearing fruit.”
Most of the conference planning team is on the patient side, rather than the industry / professional side

2. 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.

Yes.

3. Travel and accommodation expenses for patients or carers participating in the advertised program are paid in full, in advance.

We are self-certifying as honoring the intent of #PI to the fullest extent of our modest resources. See discussion in Appendix 1.

For full transparency, here is the full list of patient faculty, with status as (a) whether their employer or other paid for their travel, (b) whether they’re an SPM member (for scholarship eligibility), (c) whether they requested travel funds, (d) whether their request was granted (yes in all cases).

[3 continued]

“Scholarships[3] are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.”

[Footnote 3: “A minimum of two scholarships are disbursed, covering registration, travel, and accommodation expenses for two patient or carer delegates in full, in advance.”]

Free admission is is one option on the scholarship request form. Our registration system has been undependable so it’s hard to be precise (not all free registrations are showing up in the database) but at least six patients have been given free admission, as speakers or participants.

4. The disability requirements of participants are accommodated[4].

All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.

[Footnote 4: “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.”]

Re disability requirements: we are of course happy to accommodate ordinary ADA needs, but we don’t currently have the resources (money) to go beyond, e.g. to provide captioning etc.

We would welcome sponsors who want to fund such additions. Write to info@participatorymedicine.org

All sessions are open to all.

5. Access for virtual participants is facilitated,[5] with free streaming video provided online wherever possible.

[Footnote: “Either pre-, post-, and/or during the event. Examples 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.”]

The hashtag is #SPM2017 and is being promoted on Twitter.

Streaming: We explored commercial streaming options and have learned it’s very expensive. (Freeman: $4,757 for streaming day-of, not including archive replays; $9758 (after discount) with YourBrandLive.)

So we hope to use a free service like Periscope or Facebook Live, both of which allow archived replays as well as real-time broadcast.

Appendices with SPM travel fund details and #PI background information continue on next page.

Appendix 1: Description of SPM’s funding of patient travel and waived registration costs

Travel funds:

For several years we have offered travel scholarships for our members who self-describe as patients to help attend conferences. The application form is here.

Awards are limited to $500 each.

This is largely for tax reasons: if an award reaches $600, U.S. tax reporting rules kick in:

We are required to report it to the IRS on a 1099 form
The recipient is required to report it on their taxes, the amount becomes taxable, often knocking the net after tax down to below $500

The limit is also to ensure broader coverage, i.e. stretch our funds to provide help to more patients

Six people applied, and each was granted the amount

We have not paid these amounts in advance, mainly due to the short timeline for creating the conference and the application process.

But we will be giving checks to six recipients at the event. We chose to do this partly for pragmatic reasons (tight timeline) but also to heighten the visibility of the #PatientsIncluded movement and our support.
Each is receiving the full amount they requested, up to the $500 limit.

Appendix 2: #PatientsIncluded background information

Context: a movement aligned with Participatory Medicine

The #PatientsIncluded movement (website) is the single most visible emblem of the participatory medicine movement around the world. The SPM blog has mentioned it often, and it’s often mentioned on Twitter, and important events are increasingly working to self-certify as Patients Included.

The goal is to nudge every aspect of healthcare to proactively involve patients and patient voices in every activity that touches or is about patients - to make a reality out of “nothing about us without us.” This is completely aligned with SPM’s purpose of transforming healthcare to incorporate patient-professional partnerships.

It’s natural that our Society, as one of the leading voices for patient participation, is expected by patient activists to acknowledge the subject, and self-assess. That’s what this document is for. In short, we need to evaluate ourselves and aspire to certify, when we can.

The most recent announcement, this Thursday (tweet), is the Cochrane Collaborative’s conference next year. Cochrane is blogging about its process; this document is in a similar spirit, for SPM’s conference.

Below is a list of the certification criteria, with comments in the margins, including from the #PatientsIncluded curator, Andrew Spong.

Purpose and criteria (from their website)

The purpose of the Patients Included charters: (From their home page:)

“Patients Included charters provide entities with a means of demonstrating their commitment to incorporating the experience and insight of patients into their organisations by ensuring that they are neither excluded nor exploited.”

From their charter for conferences:

“The Patients Included conference charter provides conference[1] 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.”

[Footnote 1: “A meeting or event held by a commercial entity, health provider, society, association, organisation, or governmental body.”]

SPM fully supports this, as reflected in our mission.

SPM, as a small organization, is fully aware of and supportive of this purpose - patient inclusion is in our DNA, even in our name.

But we don’t yet have the resources to do all of it. So we’re publishing that we’re aware of it, intend to fully measure up when we can, and stating our progress toward the goal.