Patient information resources

What is the purpose of 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.

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:

1. Patients[1] participate in the co-creation[2], delivery, and review[3] of the resources produced.
2. The disability requirements of participants are accommodated[4].
3. Patients are provided with the necessary support to fully contribute[5].
4. All resources must be freely accessible either in print and/or digitally from the internet or via a mobile app[6].
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[7]  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[8].

Who are the authors of the Patients Included journal charter?

The Patients Included journal charter was written by members of the public during October-December 2016.

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 below.

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.

Footnotes

      1. An overarching term inclusive of individuals with personal experience of a health issue as well as their families, friends, and informal caregivers (Source). A minimum of two patients reflecting the intended audience must take part.
      2. Patients define the level of their participation in the resource creation process.
      3. The revision, augmentation, or updating of any resource elements.
      4. 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, interpretation services)
      5. To include the provision of access to such devices, services or technologies as may be required. Travel and accommodation expenses incurred by patients collaborating are paid in full, in advance if requested.
      6. Resources to 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 as defined by the Budapest Open Access Initiative (Source).
      7. Patients Included is a trademark of the REshape & Innovation Center.
      8. It is suggested this information be displayed prominently on the resource’s website and/or on associated printed materials.

v.1.0 December 2016