Microblog: Patients as Innovators

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The Patient Innovation European Tour
The exhibition features projects related to citizens who took action and became scientists, and shows that you don’t have to be in a lab and wearing a white coat to make a difference.
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GTCbio's Diabetes summit will be showcasing a few patient entrepreneurs working on different aspects of treatment and management of the disease. The summit will be held at the Hyatt Regency on April 5th – 7th, 2017 in Boston, MA. The following entrepreneurs and their companies will be participating in the Patient Entrepreneur Panel:

  • Karin Hehenberger, Founder and CEO of LyfeBulb
    LyfeBulb is dedicated to improve the quality of life of those living with chronic disease through investing in innovation, promoting Patient Entrepeneurs and growing an online community.

  • Charles O’Connell, Founder and CEO of Fitscript
    Fitscript is dedicated to helping people living with diabetes reach their fitness goals by getting rid of the highs and lows, and by getting in the GLUCOSEZONE.

  • Shantanu Gaur, Co-Founder and CSO of Allurion Technologies
    Allurion’s Elipse device is the first procedureless gastric balloon for weight loss. It is swallowed and naturally excreted without surgery, endoscopy, or anesthesia.

  • Matthew Loper, CEO of Wellth
    Wellth helps payers and providers thrive in a value-based environment by paying patients to be healthy, with a goal of ensuring the adoption and success of value-based care.

  • Robert Geho, Co-Founder and CEO of Diasome Pharmaceuticals Inc
    Diasome is developing breakthrough insulin efficacy solutions for people with Type 1 and Type 2 diabetes using hepatocyte targeted nanotechnology based drug delivery systems.

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The Patient-Centered Outcomes Research Institute (PCORI) now invites patients to join researchers to review research results. Join us for a special workshop hosted by PCORI at Medicine X 2016 to learn more!

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The Patient as an Innovator Executive Summary
This Executive Summary provides an overview of the Patient as an Innovator workshop.
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Stanford Medicine X co-leads Precision Medicine workshop at the White House
The workshop focused on a core principle of President Obama’s Precision Medicine Initiative (PMI) – engaging participants as partners in research.
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A Patient-Designed Do-It-Yourself Mobile Technology System for Diabetes
Nightscout Project, an innovative do-it-yourself mobile technology system for type 1 diabetes, was created by patients for patients. This bottom-up, patient-driven approach to health production has important lessons for a new era marked by patient engagement.
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Last edited by CanBiotech Inc. - 8 years ago
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A physician's personalized quest for better health
Chu’s blog, Precision: me, chronicles the first 90 days of his effort to lose weight and reverse prediabetes. On it, he tracks his weight, lab values, medications, food, exercise, and symptoms like hunger and headaches.
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The Diabetes UnConference
A patient-peer conference enabling for discussion, empowerment and health management.

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Patient Solutions
By PharmaVoice

Following the patient journey from diagnosis, disease management including treatment choice and optimization, and eventual health management.
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JOHNS HOPKINS EPILEPSY STUDY IS FIRST RESEARCHKIT APP TO USE APPLE WATCH
--EpiWatch is an epilepsy research study that monitors seizure symptoms with Apple Watch to improve seizure detection, improve medication adherence and enhance quality of life for those who suffer from seizures.
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Is there a disparity between what patients think are research priorities and the focus of academic/industry studies? Patients become experts in regard to disease and health management; their research priorities can often differ from those of academic/industry based researchers. 

Dr. Braden Manns and Brenda Hemmelgarn from the University of Calgary and Dr. Andreas Laupacis of St. Michael's Hospital surveyed patients with kidney failure who were on or approaching dialysis, their caregivers and health care professionals from across the country to determine their top research priorities.
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CanBiotech Inc.:Replied 8 years ago
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A team of advisors at PatientsLikeMe develops guidelines for researchers-best practices for engaging patients.
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PatientsLikeMe engages patients to create new health measures. Read more about the development of pain measures that assess the impact on daily functions/activities.

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Pharma Foods:

With the ability to self-monitor symptoms and disease outcomes and with the increased focus on pharma foods to prevent disease and augment health through nutrition, the industry needs to re-assess its strategy of drug design and development in isolation. Clearly the time has come that patient self-management and wellness preferences be considered as part of new biopharmaceutical drug program development. The fact that co-innovation programs are underway between pharmaceutical organizations and food companies to leverage the movement to prevent disease through a more holistic approach including nutrition, is noteworthy. What must be ensured is the early and clear voice for the patient during the design stage (Allarakhia, 2015).
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Last edited by CanBiotech Inc. - 8 years ago

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