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Preparing for
the Interview
ICPE 2016 | Dublin  Ireland | 27.08.2016
Rachel Lynch Group Facilitator FibroIreland
Patient Perspective
Overview of Patient Engagement
in Clinical and PE Research
Disclosure
 Adult Education Tutor with CDETB
 Accredited Psychotherapist
 Member of National Adult Literacy
Agency, Psychologists Protection
Society, Teaching Council of Ireland &
Irish Association of Counselling &
Psychotherapy
Personal Experience
 It took 22 years to get a
diagnosis of Fibromyalgia
 It took another 7 years
to find a treatment plan
 Bad reactions to
medications
 Early Diagnosis
 Personalised Medicine
 Comprehensive
Treatment Plan
Motivation
EUPATI
 Networking with patient advocates
& other stakeholders
 Understanding of R&D process
 Learning the terminology
 Involved in designing consent form
 Recruitment & retention of patients for
studies with TCD & NUIG
 Leveraging social media
 Simplifying complex info for patients
Impact on Patients
 #irishmed Tweetchat
Fibro & other invisible
conditions
 Over 2.4m impressions
 Trended no. 2 in Ireland
Starting the conversation
Meaningful Engagement
 #enject conference
on connected health
 Avoid 3 Bs:
Big, Beige & Boring
- your solution may
not be my answer
The Future
 Developing patient registry for Fibromyalgia
 Nothing about us without us!
 FibroIreland
Web | www.fibroireland.com
Email | northside@fibroireland.com
Twitter | @fibro_ireland
 Rachel Lynch
Web | www.rachellynch.net
Email | info@rachellynch.net
Twitter | @rachelmlynch
Collaboration Details
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Icpe final

  • 1. Preparing for the Interview ICPE 2016 | Dublin Ireland | 27.08.2016 Rachel Lynch Group Facilitator FibroIreland Patient Perspective Overview of Patient Engagement in Clinical and PE Research
  • 2. Disclosure Adult Education Tutor with CDETB Accredited Psychotherapist Member of National Adult Literacy Agency, Psychologists Protection Society, Teaching Council of Ireland & Irish Association of Counselling & Psychotherapy
  • 3. Personal Experience It took 22 years to get a diagnosis of Fibromyalgia It took another 7 years to find a treatment plan Bad reactions to medications
  • 4. Early Diagnosis Personalised Medicine Comprehensive Treatment Plan Motivation
  • 5. EUPATI Networking with patient advocates & other stakeholders Understanding of R&D process Learning the terminology
  • 6. Involved in designing consent form Recruitment & retention of patients for studies with TCD & NUIG Leveraging social media Simplifying complex info for patients Impact on Patients
  • 7. #irishmed Tweetchat Fibro & other invisible conditions Over 2.4m impressions Trended no. 2 in Ireland Starting the conversation
  • 8. Meaningful Engagement #enject conference on connected health Avoid 3 Bs: Big, Beige & Boring - your solution may not be my answer
  • 9. The Future Developing patient registry for Fibromyalgia Nothing about us without us!
  • 10. FibroIreland Web | www.fibroireland.com Email | northside@fibroireland.com Twitter | @fibro_ireland Rachel Lynch Web | www.rachellynch.net Email | info@rachellynch.net Twitter | @rachelmlynch Collaboration Details