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The Patient information needs map

A customizable resource for Precision Medicine advocates and champions to guide and organize information resources and other ongoing efforts to support patient education and awareness.

What is the Patient Information Needs Map?

A co-created tool for Precision Medicine advocates and champions, including healthcare professionals, to develop information resources for individual patients.

It is a customizable resource to guide and organize information resources and other ongoing efforts to support patient education and awareness.

Co-developed

The tool was co-developed with a large community of stakeholders (more than 20 people from 14 organizations), representing patient associations, industry, academics, researchers and external experts

Simple to use by anyone

Who can use the tool? Simple. Anyone working on precision medicine advocacy projects (for example, patient advocates with any level of experience, healthcare professionals etc).

Suitable for all projects

You can use it for any type of condition, in any geography, across the patient care pathway.

Why was this tool created?

Because the precision medicine landscape is fragmented. There is a lack of common understanding and standardization even for core issues, like the patient pathways or frequent needs for information

Through the Patient Engagement Open Forum session, co-creation activities, and working group calls we have identified that a common framework is needed to help standardize how information needs are identified and addressed.

To reduce duplication of effort and time investment of the advocacy community, by co-creating a tool based on existing best practices

Tool Context

A co-created tool for Precision Medicine advocates and champions, including healthcare professionals, to develop information resources for individual patients.

 

It is a customizable resource to guide and organize information resources and other ongoing efforts to support patient education and awareness.

Co-creation methodology

Capturing global learnings and good practices to accelerate progress and reduce duplication of effort

  • 220 information and support needs for patients in precision medicine identified
  • 320+ existing patient information resources mapped
  • Built on good practices resources that outline the precision medicine patient pathway (including DiCE, Personalized Medicine Coalition, DeciBIO, IQVIA, MacMillan)

Co-creating through multi-stakeholder working groups and consultations to identify needs and fill gaps

  • Refining possible pathways for patients through expert and public consultations* with 20 people from 14 organizations

People and organizations behind this tool