Dr Matthew GrahamBrown SpR Renal Medicine Editor and Founder RenalMed Bit of an introduction Additionally Networking and Communication Networking and Communication Nephrology related ID: 565307
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Slide1
Using Social Media to understand and respond to unmet patient need
Dr
Matthew
Graham-Brown
SpR
Renal Medicine
Editor and Founder
RenalMedSlide2
Bit of an introductionSlide3
Additionally Slide4
Networking and CommunicationSlide5
Networking and CommunicationSlide6Slide7
Nephrology related #’s - Conferences
#
BTS16
#ERAEDTA16
#KidneyWeek#UKKW2016Slide8Slide9
Nephrology related #’s
#
NephPearls
#TopNephrology
#Nephmadness#
UKRenalResearch
#NephJCSlide10Slide11Slide12
How else can we use Social Media?
Interface with patients
Data rich resource
Possible to interrogate Slide13
What we knowSlide14
FDA: Adverse event reporting from social mediaSlide15
Hello Health - BrooklynSlide16
#MPNSMSlide17
What can we do in Renal?
Well we can’t do it all at once!Slide18
IgA Nephropathy
Most common GN in the western world
Most commonly affects young patients
Local expertise to help develop resources Slide19
IgA NephropathySlide20
Questions
Can we understand more about patient needs from analysis of social media feeds?
Can we meet this need with development of social media and web-based resources, delivered back to the patient through the same channels?Slide21
Interrogating SM streams to understand needs of patients with renal disease?Slide22
Social Media Feed Interrogation
Search Criteria: ‘IgA Nephropathy’Slide23
Lots of information!Slide24
GeographySlide25
Preliminary Review
Questions related to:
Diagnosis
Treatments availableHow to prevent kidney failure
Identified informal peer support networks which shared personal experiences ofCoping with symptomsEffects of steroids
Diet restrictionsSlide26
We can get all of this from patient surveys can’t we?
Social Media Analysis
Real conversations/real questions
All freely available social media user posts can be analyzed
Agenda established by the patients
Traditional survey
Patients know their opinion is being sought
Only capture engaged patients
Led by the agenda of the surveyorSlide27
Not without important considerationsSlide28
Benefits highlighted as wellSlide29
Considerations
Privacy
Maintaining boundaries
Maintaining confidentiality
Respecting colleaguesAnonymityConflicts of InterestSlide30
Further plans
Analyze data: Framework approach
Create resources in response to identified needs in partnership with patients
Create and coordinate a social media community for peer-peer patient support within a supportive framework
Analyze impact of resources and community support at meeting unmet needSlide31
And of courseSlide32Slide33
#UkRenalResearch – Last 6 months