September 29, 2020

Global Palliative Care Database

The use of electronic health records may improve health care quality, information sharing for evidence based approaches and policies, and reduce the cost of care provision. The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce a joint collaboration project with the Fundación FEMEBA (Federación Médica de Buenos Aires, Argentina) to develop a Global Palliative Care Database (GPCD) from palliative care (PC) services from around the world.

The objectives of this project are to:

1. Provide demographic and epidemiological information of patients at the time when PC was initiated (either by a PC specialist, another specialist or a generalist)
2. Identify the prevalent symptoms at the time of the initial PC consultation
3. Identify the therapeutic interventions recommended for the treatment and management of the symptoms identified in the consultation
4. Analyze the similarities and differences among and prepare a report for publication.

The database shows the similarities and differences among reasons for referral and time of referral to PC services, as well as prescribed therapeutic interventions and referrals to other disciplines. The system registers items adapted from “An essential package of palliative care and pain relief health services” in The Lancet Commission on Global Access to Palliative Care and Pain Relief Report (2018).

Following confidentiality guidelines, no sensitive data is requested or recorded.

How is the GPCD useful to users?

The GPCD allows users to register, analyze, and have access to information (general, demographic, and epidemiological / clinical) about the initial consultations of patients accessing PC services. If the user gives authorization to share its data, the system offers two options: one to see their own data and another to see collated data.

The GPCD generates instantaneous reports on screen and offers the option to download the data in Excel spreadsheets containing all the anonymized information supplied by the services. The video below provides a glimpse on how the database provides collated information:

Individuals working in PC provision from around the globe are welcome to participate. Those interested in participating in this project must meet the following criteria:

• be an IAHPC member (join the IAHPC),
• be a current provider of PC – as a PC specialist, another specialist or a generalist
• be 18 years or older
• has access to patients’ records
• has obtained permission from the institution to participate in this study
• has obtained patients’ approval to share their data for this study

Participants who have met all the criteria will be provided with the following

• an individual access code to the system
• instructions on the use of the database
• description of the questionnaire

Individuals who participate in the project will be provided with a free six-month extension of their membership as a gesture of gratitude for their contribution and effort to advance global PC.

To enroll in the project and access the database, you will need your IAHPC membership number and the email affiliated to your membership.

Participate in GPCD Project

If you need your membership number or additional information on how to renew, please contact Genevieve Napier, IAHPC Programs Officer.