What do patients' need?


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What do patients' need, right now, at this very given moment? It's an excellent question, which--if we mean to actually achieve--we should narrow down to a few concise and relevant points.

Paramount to the deconstruction of patient needs is understanding what the goal for patients is. This goal isn't just to live. It's to live well. It's to contribute to and enjoy the world -- to have hike the mountains, enjoy the breeze of the oceans, bask in the heat, laugh with friends, love our partners, and grow as a person.

Now, moving slowly from the goal to the respective problems. We have patients who are ill once or twice and are then relatively healthy, healthy patients who see their doctor once a year for a checkup, chronically ill people who live for the rest of their life with chronic conditions like Crohn's or Hyperthyroidism, and there are terminal patients dealing with life threatening illnesses. Certainly, there are many many more subsections of patients.

The needs for each of these segments are varient - varying along a spectrum with healthy patients needing less than the chronic and the chronic needing less than the terminal. Some people happen to be further along this spectrum than others. At the end of this presentation, we announced a survey to enumerate and articulate these needs across these various spectrums. It is our hope that this survey helps illustrate these pieces along the timeline, allowing us to focus on perfecting each piece.

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  • be strong and healthy so you can go out and enthusiastically travel, have fun with your friends, and ... have friends with... benefits ;)
  • instead of assuming what patients need, let's empower patients to share what they think is right, at this point for them
  • What do patients' need?

    1. 1. What do patients need patients 2.0 Patient Needs WG
    2. 5. GOAL is same
    3. 6. How do we achieve this goal? <ul><li>Healthy people </li></ul><ul><ul><li>access your health data </li></ul></ul><ul><ul><li>add to your health data </li></ul></ul><ul><ul><li>diet </li></ul></ul><ul><ul><li>exercise </li></ul></ul><ul><ul><ul><li>education on which exercise platforms are good for them </li></ul></ul></ul><ul><ul><ul><li>gym/exercise plans </li></ul></ul></ul><ul><ul><ul><li>money for gym/plans </li></ul></ul></ul><ul><ul><ul><li>time for gym/plans </li></ul></ul></ul><ul><ul><ul><li>community based on exercise goals </li></ul></ul></ul><ul><li>Sick people </li></ul><ul><ul><li>research in </li></ul></ul><ul><ul><ul><li>biomarkers </li></ul></ul></ul><ul><ul><ul><ul><li>genetic </li></ul></ul></ul></ul><ul><ul><ul><ul><li>proteomic </li></ul></ul></ul></ul><ul><ul><ul><ul><li>other </li></ul></ul></ul></ul><ul><ul><ul><li>systemic understanding </li></ul></ul></ul><ul><ul><ul><li>diagnostics </li></ul></ul></ul><ul><ul><ul><li>prognostics </li></ul></ul></ul><ul><ul><ul><li>treatments </li></ul></ul></ul><ul><ul><ul><ul><li>side effects </li></ul></ul></ul></ul><ul><ul><ul><ul><li>efficacy </li></ul></ul></ul></ul><ul><ul><li>education </li></ul></ul><ul><ul><li>community/support  </li></ul></ul><ul><ul><li>resources </li></ul></ul>
    4. 7. e(mpowered)-Patient <ul><ul><li>Education </li></ul></ul><ul><ul><ul><li>content (i.e., genetics education, diet/nutrition education, treatment education, diagnostic education, disease/ailment education) </li></ul></ul></ul><ul><ul><ul><li>delivery </li></ul></ul></ul><ul><ul><li>Legislative and political empowerment (e.g., the Abigail Alliance, American Cancer Society) </li></ul></ul><ul><ul><ul><li>access to experimental therapies </li></ul></ul></ul><ul><ul><ul><li>access your entire medical staffs' contact information </li></ul></ul></ul><ul><ul><li>Financial, entrepreneurial, and stakeholder empowerment </li></ul></ul><ul><ul><ul><li>Communities (e.g., Crohnology.com, ACOR.org, Caringbridge.org, PatientsLikeMe.com) </li></ul></ul></ul><ul><ul><ul><li>Research (e.g., PXE International, Addi and Cassi Fund) </li></ul></ul></ul><ul><ul><ul><li>Culture shifts </li></ul></ul></ul><ul><ul><ul><ul><li>Collaborative care / shared-decision making </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Access and ownership of health data </li></ul></ul></ul></ul>
    5. 11. Patient Needs Survey
    6. 12.