Patients Included is a Trademark of the REshape & Innovation Center

Patients Included: a global patients’ charter

UPDATE: Patients Included, a charter for conferences was published online here on 1 May 2015 at 2pm UK time.

Please listen to this short (1:21) introduction to the Patients Included Global Patients Charter before reading what follows:

This is the week that the ‘patients at conferences’ discussion went critical.

A number of blog posts, facebook discussions, and Twitter conversations have emerged, all of which signify the need for the development of a systematic means of calling to account the practices of conference organisers who wish to include patients, in any capacity.

This is not a new debate, and many voices have participated in it to date.

Landmark posts (see also here) from Lucien Engelen and a long-standing commentary on a number of aspects of the discussion by Dave deBronkart have cleared much of the ground around this topic.

However, it has been remarked on numerous occasions by many observers over a number of years that in order for the Patients Included initiative to be able to exert any sort of influence, an instrument is required against which the compliance of conference organisers may be measured, and through which they may be called to account.

Those that are compliant would be able to accredit themselves as meriting the display of the ‘Patients Included‘ logo, and linking to the charter.

Those that are not compliant could be encouraged to become so.

Everything that follows — including the name of this initiative — is up for debate, but the easiest way of simplifying the challenge of defining what a Patients Included Global Patients’ Charter could encompass, and how it will be brought into existence, may be to offer a working hypothesis.

So I will.

What is the Patients Included Global Patients’ Charter?

The Patients Included Global Patients’ Charter is a means of attempting to ensure that patients are neither excluded from nor exploited by conferences.

Who are the authors of the Patients Included Global Patients’ Charter?

Everyone who participates in any aspect of the creation of the charter will be cited as a co-signatory. Anyone (meaning stakeholders from any community of interest) may participate in the debate leading to its creation. Subsequent to its publication, the charter will be open indefinitely for the contribution of additional co-signatories who wish to signify their support for its objectives.

What will the Patients Included Global Patients’ Charter consist of?

The Patients Included Global Patients’ Charter will be comprised of a number of criteria (provisionally suggested to be no more than five items; this is to be discussed) against which the performance of conference organisers will be assessed.

Those who are compliant will be allowed to display the Patients Included logo in their promotional materials, and to link to the Patients Included Global Patients’ Charter.

Those who are not compliant may be encouraged to become so by signatories, or other supporters of the charter.

How can I contribute to the Patients Included Global Patients’ Charter, and review the clauses proposed to date?

It is provisionally proposed that contributors add clauses they would like to see featured in the Patients Included Global Patients’ Charter to an open document.

The Patients Included Global Patients’ Charter open document may be found here.

Other contributors may signify their support for previously submitted clause considerations, and/or submit clauses of their own.

The five (a provisional number; see above) clauses which secure the most support by 31 March 2015 will be deemed to constitute the Patients Included Global Patients’ Charter.

Framing language for the charter will be proposed, and circulated as an open document for editing by any interested parties.

The Patients Included Global Patients’ Charter 2015 will then be deemed to be complete.

The provisional publication date for the Patients’ Included Global Patients Charter is 1 May 2015.

Where will the Patients Included Global Patients’ Charter be hosted?

patientsincluded.org has provisionally been reserved for the hosting of the Patients Included Global Patients’ Charter. All costs associated with the hosting of the page are currently being borne by STweM Ltd, a UK limited company.

For the avoidance of doubt, it should be stated that STweM Ltd makes no claim to either ownership or influence over the Patients Included Global Patients’ Charter, and has registered the domain solely for the purpose of having somewhere to host the charter which contributors and supporters may link to.

The website will not accept advertising. The website will not be revenue generating. The website will have no commercial value.

What is the business model supporting the Patients Included Global Patients’ Charter?

The Patients Included Global Patients’ Charter does not have a business model.

All contributors to the Patients Included Global Patients’ Charter are giving freely of their time in the belief that it is both an ethical imperative and a means of doing social good to ensure that patients are neither excluded from nor exploited by commercial conferences.

I have a question/comment about the Patients Included Global Patients’ Charter. Where should I post it?

In order to contribute to the discussion around the Patients Included Global Patients’ Charter, please publish a tweet including the hashtag #PatientsIncluded.

You are also welcome to submit the same question as a comment to this post, but please ensure you do both in order that all those only following the hashtag see your contribution.

All other comments are welcome.

I want to talk with others about the Patients Included Global Patients’ Charter

There will be an open Google Hangout at 18:00 UK time on Wednesday 11 March.

A tweet will be published under the hashtag #PatientsIncluded with a link immediately prior to the event starting.

Patients Included is a Trademark of the REshape and Innovation Center

3 thoughts on “Patients Included: a global patients’ charter

  1. Thanks for taking the initiative Andrew! May I suggest to add a list of the posts that we, patients, have written about #PatientsIncluded.
    Many have written, besides me (http://www.patientsinpower.gr/default.asp?pid=35&la=2, http://bit.ly/17XYwOT, The Invisible Stakeholder, http://bit.ly/17XYoid, …) among them Susanna Fox http://susannahfox.com/2013/11/21/patients-included/, Carolyn Thomas, e-patient Dave (http://e-patients.net/archives/2013/11/e-patient-manifesto-patients-included.html), and others..
    This will create a forum of patient opinions on the matter necessary to inform its many aspects …..
    Such an aspect is a recent development: the exclusion of non prescribers, i.e. patient advocates from visiting the exhibition area and satellite events at big medical congresses in some European countries… Nowadays, patient advocates attending medical conferences are bright, educated, knowledgeable individuals most of them active in patient organisations, who, of course are well informed about medicines and treatments, via personal experience, the internet and other sources of information. We understand that in Europe the advertising of medicines is strictly forbidden but patient advocates visiting or passing through the exhibition area does mean they are inviting advertising…..

  2. Great initiative Andrew, Great initiative. Thought about codifying a while ago look at my post (oct 2012) after the initial one on #patientincluded. Didn’t take on to that after all, wanted to raise awareness first, think that has been done, now it’s time for the next step indeed. https://www.linkedin.com/pulse/20121028221145-19886490-ready-for-the-stars-patients-included. When we first started with our TEDx-conferences (2011 & 2012 Maastricht, 2013 Nijmegen) we started to have about 25% of the speaker being patients, The first one being my (now) friend Dave, who rocked the place. Since then every conference starting to to have patients from a genuine need, experienced those talks to be get the highest ratings.

  3. Andrew, I’m totally on board to help with this. Having been to several hundred conferences in the past 5 years, with everything from full support to full antagonism, I have lots of thoughts. I strongly support Lucien’s “1 to 5 stars” idea.

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