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

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The Patients Included charter formalises aspirations first expressed by Lucien Engelen in a blog post in 2010: “When I was presenting at medical and technology conferences around the world, people used to talk about what the patient wants, or what the doctor wants, without a patient, doctor or nurse being in the room. This astonished me, and a real page turner for me was a conference in Dubai, where all the major telecom companies in the world were present. Everyone was talking about mHealth, how huge it would become, and how many people would be using it, and thereby earning many billions of dollars.

When it was my turn to deliver my keynote, I asked the audience ‘How many patients are present here?’ Not one, it appeared. That there should be so much talk about what patients need and want without them being present prompted me to take action.

I decided to no longer present nor visit conferences without patients being present on the stage, or as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee. During the following year, I continued to push my message and encouraged conferences that took action to use the Patients Included logo which I devised. The following year, I stopped accepting speaking requests if the meetings did not meet the Patients Included criteria.”

I decided to no longer present nor visit conferences without patients being present on the stage, or as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee.”

Which Patients Included charters have been published to date?

To date, three Patients Included charters have been published: (1) Conferences; (2) Journals; and (3) Patient information resources.

The Patients Included conference charter

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(s), while ensuring they are neither excluded nor exploited. The Patients Included conference charter was written by members of the public during March and April 2015.

How can a conference achieve Patients Included status?

Patients Included status is self-assessed. A conference successfully meeting all five of the charter’s clauses may accredit itself as a Patients Included event. The Patients Included conference charter clauses are:

  1. Patients or caregivers with experience relevant to the conference’s central theme should actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
  2. Patients or caregivers with experience of the issues addressed by the event should actively participate in its delivery (as a speaker, moderator, panelist, workshop leader, or in any other formal capacity), and appear in its physical audience.
  3. Travel and accommodation expenses for patients or carers participating in the advertised programme should be paid in full, in advance. Scholarships should be provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates. A minimum of two scholarships should be offered, covering registration, travel, and accommodation expenses for two patient or carer delegates in full, in advance.
  4. The accessibility requirements of participants are accommodated, as far as is practical for the applying organisation. Examples include: provision of wheelchair access; empty front row for wheelchair users; standing desks; sensory guides; loop systems; video captioning; and rest areas. All applicable sessions, breakouts, ancillary meetings, and other programme elements should be open to patient delegates.
  5. Access for virtual participants should be facilitated either pre-, post-, and/or during the event. Examples include: questions and comments proactively gathered from virtual participants via social media; the use of a pre-advertised hashtag; presentations made available for download at no cost; and free streaming videos provided online, wherever possible.

How can a conference promote its Patients Included status?

A conference fulfilling all five of the charter’s clauses may display the trademarked Patients Included logo on its website, promotional materials, and programme featuring a link to the conference charter’s home page. Conferences should be able to provide evidence in support of their Patients Included status to the public, and it is suggested that this information be included on the event’s website and programme. Here are a list of accredited conferences, all with Patients Included status. If you would like to claim official Patients Included status for an event you are self-accrediting that complies with all five of the Patients Included conference charter clauses, please complete the form via this link.

What can I do to show my support for the Patients Included conference charter?

The Patients Included conference charter supporters may become signatories to the charter by adding their name to the form that can be found here. You’ll find me on the list!

Feedback concerning the Patients Included conference charter

Contributions to ongoing discussion concerning the #PatientsIncluded conference charter on Twitter are invited, as is all feedback concerning compliant and non-compliant events. Instances where conferences organisers are deemed to have either exceeded or breached the charter’s clauses are particularly welcome too.

The Patients Included journal charter

The Patients Included journal charter provides journal publishers with a means of demonstrating a title’s commitment to incorporating the experience of patients as experts in living with their condition by ensuring that patients are neither excluded from nor exploited by publications. The Patients Included journal charter was written by members of the public during March 2016.

How can a journal achieve Patients Included status?

Patients Included status is self-assessed. A journal successfully meeting all four of the charter’s clauses may accredit itself as a a Patients Included publication. The Patients Included journal charter clauses are:

  1. At least two patients sit on the editorial board of the journal.
  2. Patients routinely publish editorials, reviews, or research articles in the journal as authors. The journal should explicitly invite contributions from patients.
  3. Patients serve as peer reviewers of submissions to the journal.
  4. The journal is an open access publication, with no barriers to access full text content.

How can a journal promote its Patients Included status?

A journal fulfilling all four of the charter’s clauses may display the trademarked Patients Included logo within its publication, on its website, and in any promotional materials that it may produce. The self-accrediting title may also feature a link to the journals charter’s home page. Journals should be able to provide evidence in support of their Patients Included status to the public. It is suggested this information be displayed prominently on the publication’s website. Here are a list of accredited journals, both of which have Patients Included status. It is a real shame to only see two journals here – so I really hope that others follow suit. If you would like to claim official Patients Included status for a journal you are self-accrediting that complies with all four of the Patients Included journal charter clauses, please complete the form via this link.

What can I do to show my support for the Patients Included journal charter?Patients Included journal charter supporters may become signatories to the charter by adding their name to the form that can be found here.

Feedback concerning the Patients Included journal charter

Contributions to ongoing discussion concerning the #PatientsIncluded journal charter on Twitter are invited, as is all feedback concerning compliant and non-compliant publications. Instances where titles are deemed to have either exceeded or breached the charter’s clauses are particularly welcome.

The Patients Included patient information resources charter

The Patients Included patient information resources charter provides organisations with a means of demonstrating their commitment to incorporating the experience of patients as experts in living with their condition by ensuring their involvement in the authoring of information concerning a given disease. The Patients Included journal charter was written by members of the public during October-December 2016.

How can a patient information resource achieve Patients Included status?

Patients Included status is self-assessed. A patient information resource successfully meeting all five of the charter’s clauses may accredit itself as a Patients Included patient information resource.

Patients Included patient information resources charter clauses are:

  1. Patients participate in the co-creation, delivery, and review of the resources produced.
  2. The disability requirements of participants are accommodated as far as is practicable for the applying organisation. Examples include: provision of universally accessible meeting spaces; accommodation of environmental sensory needs (e.g. light, heat, odour); fulfilment of formatting requests (e.g. provision of video captioning, audio files, signing, and interpretation services).
  3. Patients are provided with the necessary support to fully contribute. The provision of devices, services or technologies may be required to ensure patients can contribute to the best of their abilities. Travel and accommodation expenses incurred by patients collaborating should also be paid in full, in advance if requested.
  4. All resources must be freely accessible either in print and/or digitally from the internet or via a mobile app. Resources should be made available at no cost to the end user, and with no requirement to enter any personal data to obtain access. Materials published in journals or their equivalent must be Open Access.
  5. All resources must be patient-centred, free of jargon and undefined acronyms, and prepared in plain language.

How can a patient information resource promote its Patients Included status?

A patient information resource fulfilling all five of the charter’s clauses may display the trademarked Patients Included logo on the resource’s website, and/or in any associated printed materials. The self-accrediting patient information resource may also feature a link to the patient information resources charter home page. Self-accrediting patient information resources should be able to provide evidence in support of their Patients Included status to the public. It is suggested this information be displayed prominently on the resource’s website and/or on associated printed materials. Here are a list of accredited patient information resources which have Patients Included status. If you would like to claim official Patients Included status for a patient information resource you are self-accrediting that complies with all five of the Patients Included patient information resources charter clauses, please complete the form via this link.

What can I do to show my support for the Patients Included patient information resources charter?

Patients Included patient information resources charter supporters may become signatories to the charter by adding their name to the form that can be found here.

Feedback concerning the Patients Included patient information resources charter

Contributions to ongoing discussion concerning the #PatientsIncluded patient information resources charter on Twitter are invited, as is all feedback concerning compliant and non-compliant materials. Instances where resources are deemed to have either exceeded or breached the charter’s clauses are particularly welcome.

Which Patients Included charters have been proposed for development in the future?

  • Innovation processes;
  • Clinical trials;
  • Hospital and health maintenance organisation (HMO) innovation centres;
  • Continuing professional development (CPD/CME) for healthcare professionals;
  • Pharmaceutical companies;
  • Grant awarding bodies;
  • Health systems and healthcare providers;
  • Healthcare facilities and estate planning.

Let’s make it our aim to get more conferences, journals and patient information resources listed on the Patients Included website in 2018!

Credit: Patients Included

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Written by simonrstones

Simon Stones, BSc (Hons), AMRSB, is a Biomedical Sciences graduate and a doctoral researcher in child and family health. He is a passionate activist and ambassador for young people living with invisible illnesses, inspired and empowered by his own journey with arthritis, fibromyalgia, and inflammatory bowel disease.

One comment

  1. Thanks for sharing this Simon, really useful to learn about this. A lot of discussion in MH at the moment which is neglecting patient (or service user!) input.

    Like

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