What is the purpose of the Patients Included™ Ethics Charter?
The Patients Included™ Ethics Charter provides organisations with the means of demonstrating their commitment to patients by involving them in their work, accommodating patients’ requirements, and ensuring that patients are offered compensation.
How can an organisation accredit?
Patients Included™ accreditation is self-assessed. An organisation that successfully meets all six of the charter’s clauses may accredit itself as Patients Included™ Ethics Charter compliant.
Organisations wishing to self-accredit as Patients Included™ Ethics Charter compliant must place a statement in the public domain on the Internet describing how they meet all six of the following clauses from the date of the submission of their claim onwards:
Patients Included Ethics Charter clauses:
- Projects[1] will be designed, implemented, and evaluated with the direct involvement of patients[2, 3].
- Project goals will be co-created with patients and clearly express their relevance to patient health outcomes and quality of life[3].
- Patients participating in projects will be updated about project milestones according to a mutually agreed calendar.
- The disability requirements of participants will be accommodated[4].
- All expenses associated with patients taking part in a project will be offered in full, in advance. In addition, patients will be offered compensation[5] for their participation equivalent to that of other project members in a transparent and ethical manner.
- The percentage of the total fee associated with the project retained by each participant will be stated in the public domain, unless otherwise requested by the patients taking part.
Footnotes
[1] Including, but not restricted to: research initiatives, clinical trials, and quality improvement.
[2] Individuals with personal experience of a health issue as well as their families, friends, and informal caregivers (Source). A minimum of two patients from the patient population the project addresses must take part.
[3] Patients will define the extent of their participation in the design, development, and implementation processes.
[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] Form of compensation to be determined by patient preference. For example: wire transfer, gift card, donation to a charity, institution, or patient group, or any other form of mutually agreed payment.
[6] Patients Included is a trademark of the REshape & Innovation Center.
[7] It is required that an open access link to the supporting statement submitted as part of the Patients Included™ Ethics Charter self-accreditation claim be displayed prominently on the organisation’s website, digital presences, and printed matter wherever and whenever the Patients Included™ logo is displayed.
How can an organisation promote its Patients Included™ status?
An organisation fulfilling all six of the charter’s clauses may display the Patients Included™ logo[6] on its website, digital presences, and printed materials[7].
Who are the authors of the Patients Included™ Ethics Charter?
The Patients Included™ Ethics Charters was written by members of the public during March-April 2018.
What can I do to show my support for the Patients Included ethics charter?
Patients Included ethics charter supporters may become signatories to the charter by adding their name to the form below.
Feedback concerning the Patients Included™ Ethics Charter
Contributions to ongoing discussion concerning the #PatientsIncluded Ethics Charter on Twitter are invited, as is all feedback concerning compliant and non-compliant organisations. Instances where conferences organisations are deemed to have either exceeded or breached the charter’s clauses are particularly welcome.
v.1.0 April 2018
Patients Included 