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Patient Charter

Since its establishment, ICHOM has been an organization that has valued the insights and co-leadership of patients (lived experience experts*) in the assessment of health outcomes that enables patient involvement in healthcare decisions, and continuous improvement and high value patient-centered care around the world.

We are dedicated to patient-centricity in the promotion of health outcomes most important to patients, and in the approach we take across our initiatives, such that patient collaboration is at the heart of all our work. This includes creating processes and environments that facilitate patient engagement such as in the co-design of ICHOM sets of patient-centered outcome measures.

We are therefore pleased to announce the ICHOM Patient Charter, which provides a framework to further strengthen partnerships with patients and patient communities built on equity, trust, and respect. The ICHOM Patient Charter outlines our commitments to the patient community, and comprises eight statements relating to the empowerment actions and ways of working that patients can expect when collaborating with ICHOM.

The ICHOM Patient Charter was developed in consultation with our patient community, including referencing international frameworks such as International Alliance of Patients' Organizations (IAPO), and through a Patient Validation Survey. The survey invited inputs on the content and prioritization of the Patient Charter statements. Findings from the survey (18 respondents) revealed strong support, with over 75% agreement across all statements. Additionally, the survey provided invaluable qualitative feedback which will be followed up with in-depth interviews to provide insights on how to innovate on our ways of working and enhance patient-centricity in ICHOM’s way of working going forward.

We extend our thanks to all of the respondents thus far for taking the time to share their inputs to the Patient Charter. The Patient Charter will help ICHOM better align the way we work and partner with the diverse needs and priorities of our patient community, and further amplify patient voices.

*While ICHOM uses the ‘patient’ terminology for the sake of clarity and consistency, we fully recognize that there are a range of terms within different communities that are preferred, including clients, consumers, and users.

**Please note that the Patient Validation Survey was only able to gather responses from adult patients or carers residing in the United Kingdom or United States due to IRB exemptions that we were able to obtain for the distribution of this survey. Going forward ICHOM is exploring avenues for including more diverse patient inputs (including more country representation) for similar patient surveys. To provide an opportunity to include more global perspectives, ICHOM plans to host an online public webinar and consultation to gather live patient inputs from around the world. ICHOM acknowledges that obtaining IRB exemptions may create a dynamic where respondents feel like study subjects instead of research partners and co-creators of the work. We assure you that ICHOM’s intention with IRB processes is to gather direct patient inputs while complying with research and data protection requirements.

Our Patient Charter statements are:

I am more than my medical condition.”

I have the right to be involved in decisions that will impact my health and wellbeing through shared goal-setting with clinicians to improve the articulation and measurement of health outcomes.”

The expertise of my lived experience is a first-line component of defining health outcomes measurement.”

I have the right to equal partnership in the design and determination of how outcomes for my health condition should be assessed.”

I have a right to fair compensation for my contribution of lived expertise to research and related initiatives on health outcomes measurement.”

I believe that my participation in research and advocacy efforts contributes to a rich tapestry of patient experiences.”

I own my story, and have the right for what I share of it to be treated with respect.”

All patients deserve and are entitled to the above.”

You can view more information on our Patient Charter on this flyer

Visit our YouTube Channel and find out more about how we work with Patients

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If you are a person with lived experience of a health condition and are interested in working with ICHOM, or have further inputs, please contact:

ICHOM Project Manager, Umanga de Silva, at u.desilva@ichom.org.

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