This document discusses the needs of patients. For healthy people, it identifies needs like accessing and adding to one's health data, following dietary and exercise plans, and finding education and community related to exercise. For sick people, it outlines needs like research into biomarkers, diagnostics, prognostics, and treatments as well as their side effects and efficacy, plus education and community/support resources. Finally, it describes an "empowered patient" and their needs like education on various health topics through different delivery methods, legislative empowerment to access experimental therapies and doctors' contact info, and financial empowerment through communities, research, and culture shifts toward collaborative care and ownership of health data.

1. What
do
patients
need
patients 2.0 Patient Needs WG

5. GOAL is same

6. How do we achieve this goal?
Healthy people Sick people
• access your health data • research in
• add to your health data o biomarkers
• diet § genetic
• exercise § proteomic
o education on which exercise § other
platforms are good for them o systemic understanding
o gym/exercise plans o diagnostics
o money for gym/plans o prognostics
o time for gym/plans o treatments
o community based on § side effects
exercise goals § efficacy
• education
• community/support
• resources

7. 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 therapies
o access your entire medical staffs' contact information
• Financial, entrepreneurial, and stakeholder
empowerment
o 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