what do patients need

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