Content curation policy
This page was last updated on 16 February 2023
The “Pulmonary Hypertension Knowledge Sharing Platform“ (PH-KSP) is managed by the “Alliance for Pulmonary Hypertension” (AfPH), registered in Brussels, Belgium, as an international non profit organisation, IVZW (Internationale Vereniging Zonder Winstoogmerk), under Belgian law. The registration is published in the Belgian Official Journal (Belgish Staatsblad) at the Reg. n°. 0757534861. The AfPH has its offices in Washingtonstraat 40, 1050 Elsene, Belgium.
Article 1- Description of the Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP
The PH-KSP is a online platform whose aim is to share knowledge, information, skills and best practices in the field of pulmonary hypertension (PH) with the different stakeholders around the world interested in improving the lives of pulmonary hypertension patients, their families and communities.
By accepting our Content curation policy you accept that the following policy is applicable to any content you submit through the PH-KSP “Share your knowledge” form.
Article 2 – What knowledge is available?
The PH-KSP hosts six core categories of knowledge:
- “Pulmonary hypertension”: different forms of pulmonary hypertension, treatments, surgery, clinical trials, research, patient stories, etc.
- “Related issues”: specific populations, family planning, mental health, socio-economic issues. etc
- “Resources”:audiovisual, multimedia, hands-on guides, publications, interviews, scientific articles, regulatory autorities information, content generated by patients, by patient associations, etc.
- “Events/initiatives”: awareness and advocacy campaigns, Calls to Action, sports events, etc.
- “Support” (patient associations, social media support groups, self-management and lifestyle advice, patient educational resources, etc.
- “Global issues”: patient engagement, patient-HCP communication, new trends in medicine, E-Health
Article 3 – Submission validity requirements, review and publication of content
- PH-KSP users may submit different types of content to be uploaded, published and shared on the platform via the “Share knowledge” form (e.g. articles, videos, photos, patient stories) to which they join their authorization to publish (and the authorization of any other identifiable person in their submission) by filling in the Authorization form
- A “Content Curation Committee” composed of volunteers with consolidated experience in the PH field will review the content according to the PH-KSP’s submission criteria (see below).
- One or more health care professional specialised in pulmonary hypertension will be consulted for any information that is related to health care, treatments, treatment management, surgery or other medical information (we rely on the expertise of a number of experts from the member countries).
- In the case of submissions in languages other than English we will involve patient associations from the relevant countries in the review process.
- Feedback to the contributor is provided within one week of submission.
- Additional information may be requested e.g. further details that are important for publication such as authors, sources and the necessary authorizations forms of the author(s) or of any persons which are identified in the submission (concerning their image, personal data and any other rights) , etc. Please consult our Authorisation form
The content is published on the PH-KSP and may also be shared via the AfPH social media accounts.
Regular users also play a key role in keeping the PH-KSP useful and reliable. Please flag any potential issues via our Content form.
Article 4 – Submission criteria
Content submitted to the PH-KSP must be
- In line with the AfPH’s aim to improve the lives of PH patients and families
- Relevant to pulmonary hypertension, either directly or indirectly
- Respectful and appropriate for public display
- Topical, related to initiatives/events that are happening at the present time
- Cleared for publication (e.g. authorisation is needed in case of a scientific article)
- Not related in any way to promotional or commercial activities
Article 5 – Disclaimer
The AfPH cannot be held responsible for any action taken as a result of viewing any materials from the PH-KSP website. Every possible effort will be taken to ensure that the PH-KSP website content is accurate and up-to-date but its content may still include opinions of experts that are the best knowledge at the time of publication but may now be outdated, and materials that are otherwise inaccurate or incomplete. We invite users to consult with their health care professionals before making any decisions based upon them.
Any mention of specific companies or products in the PH-KSP does not imply that they are endorsed or recommended by the AfPH.