What do patients need patients 2.0 Patient Needs WG
GOAL is same
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
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
