What do patients need patients 2.0 Patient Needs WG
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What
do
patients
need
patients 2.0 Patient Needs WG
GOAL is same
How do we achieve this goal?Healthy people• access your health data• add to your health data• diet• exercise
o education on which exercise platforms are good for them
o gym/exercise planso money for gym/planso time for gym/planso community based on
exercise goals
Sick people• research in
o biomarkers§ genetic§ proteomic§ other
o systemic understandingo diagnosticso prognosticso treatments
§ side effects§ efficacy
• education• community/support • resources
e(mpowered)-Patient• Education
o content (i.e., genetics education, diet/nutrition education, treatment education, diagnostic education, disease/ailment education)
o delivery• Legislative and political empowerment (e.g., the Abigail
Alliance, American Cancer Society)o access to experimental therapieso access your entire medical staffs' contact information
• Financial, entrepreneurial, and stakeholder empowermento Communities (e.g., Crohnology.com, ACOR.org,
Caringbridge.org, PatientsLikeMe.com)o Research (e.g., PXE International, Addi and Cassi Fund)o Culture shifts
§ Collaborative care / shared-decision making§ Access and ownership of health data
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