LymeDisease.org’s Lyme Disease Healthcare Presentations

LymeDisease.org actively researches, presents and publishes on numerous Lyme disease related topics that directly impact the lives of people coping with Lyme disease. Below find presentations of our research. Many of these presentations have been presented at prominent Lyme disease focused conferences and meetings as well as a number of highly influential US and international government sponsored groups on the role of Lyme disease patients in healthcare policy.

Featured Presentations

The Intersection Between Evidence-Based And Patient-Centered Healthcare

Lorraine Johnson, JD, MBA, LymeDisease.org CEO
Cochrane Colloquium – Plenary II

Lyme Disease: The New Pharma Frontier Presentation by Dr. Raphael Stricker

Dr. Raphael Stricker, LymeDisease.org Medical Director
MyLymeData 2017 Conference

Stealth Pathogens – Finding the Win/Win

Dr. Christine Green, LymeDisease.org Medical Director
MyLymeData 2017 Conference

Latest Results From MyLymeData

Lorraine Johnson, JD, MBA, LymeDisease.org CEO
MyLymeData 2017 Conference

Lyme Disease Healthcare Presentations

  1. "Access to Care: Measuring what matters, Health and Human Services"
    Tick Borne Diseases Working Group, Access to Care Subcommittee
  2. "Patient Centered Healthcare, Trial Innovation, and MyLymeData Early Results, Health and Human Services"
    Tick Borne Diseases Working Group, Pathogenesis, Transmission, and Treatment Subcommittee
  1. "Patient Centered Lyme Disease Research & Big Data"
    Health and Human Services—Tick Borne Diseases Working Group, Washington, DC. December 11, 2017
  2. "MyLymeData: The Value of Using Big Data and Subgroup Analysis in Lyme Disease"
    Columbia/LDA Conference, Philadelphia. September 24th, 2017
  1. "PCORI and the Ripple Effect"
    Patient Communities. Washington, DC. October 21, 2016
  2. "Patient Compensation: PCORI's Compensation Framework - Considerations and Practices from the Field"
    NIH Collaboratory Grand Round. Webinar. January 29, 2016
  3. "Patient Powered Research. American Association for the Advancement of Science"
    Washington, DC. February 14, 2016
  4. "Precision Medicine Initiative Summit"
    February 25, 2016. Washington, DC.
  1. "Patient Powered Research"
    Stanford MedX Conference. Stanford, CA. September 26, 2015
  2. "Patients Front and Center"
    PCORI Association of Healthcare Journalists Fellowship Conference. Washington, DC October 12, 2015
  3. "Patient Powered Research Registries: Hope or Hype"
    Consumers United for Evidence-Based Healthcare, Annual Meeting Washington, DC 2015
  4. "Birth Amidst Chaos: An Emerging Research Network Finds Patient Voice"
    NIH Science of Team Science Conference, Washington DC. June 3, 2015
  5. "Disciplinary diversity in multi-stakeholder governance structures: Facilitating a culture of engagement and enhancing relevance of policies and resources for patient-centered research networks"
    Science of Team Science Conference. June 3, 2015
  1. "Transforming Culture: PCORI's Approach to Meaningful Patient Engagement in Research"
    Kaiser Permanente Center for Effectiveness and Safety. Webinar. October 16, 2014
  2. "Patient Privacy and Making Data Available, Panel Moderator"
    Consumers United for Evidence-Based Healthcare, Annual Meeting Washington, DC 2014
  3. "Intellectual Conflicts of Interest and the Consumer"
    Consumers United for Evidence-Based Healthcare, Annual Meeting Washington, DC 2014
  4. "Putting the Patient and Public in the Center"
    HTAi, Fireside Chat, Putting the Patient at the Center, Washington, DC (2014)
  1. "The Intersection of Evidence Based and Patient Centered Healthcare"
    Plenary speech at Cochrane Colloquium in Quebec, Canada (2013)
  1. "CUE: The Journey From Outside In"
    Consumers United for Evidence-Based Healthcare, Annual Meeting Washington, DC 2012
  2. "Evidence-Based Medicine: Making Values Transparent"
    Annual Conference in Boston of the International Lyme and Associated Diseases (2012)
  1. "Evidence, Evidence Gaps and Stakeholders"
    Cochrane Consumer Network at the Cochrane Colloquium in Denver, CO (2010)
  1. "Ethics in Healthcare and the Role of Informed Consent"
    National Lyme Disease Consensus Meeting in Toronto, Canada (2006)
  2. "Specialty Bias, Guidelines, Clinical Judgment, and Quality of Healthcare"
    Centers for Diseases Control working meeting, Washington, DC (2006)
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