February 19, 2020

Sage Perspective: Retention in Remote Digital Health Studies

John Wilbanks

Sage Perspective: Retention in Remote Digital Health Studies

Editor’s note: This is a Twitter thread from John Wilbanks, Sage’s chief commons officer.

 

New from Abishek Pratap and a few more of us – Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

A few thoughts on the paper:

  1. Hurrah for data that’s open enough to cross-compare.
  2. When someone shows you overall enrollment in a digital health study, ask about engagement % on day 2. It’s a way better metric.
  3. Over-recruit the under-represented with intent from the start or your sample won’t be anywhere close to diverse enough.
  4. Design your studies for broad, shallow engagement – your protocol and analytics will be better matched.
  5. Pay for participation and clinician involvement make a huge difference. Follow @hollylynchez who writes very clearly on the payment topic.
  6. Clinician engagement is going to need some COI norms because whew it’s easy to see where that can go sideways.
  7. When your study is flattened down to an app on a screen, the competition is savage for attention and you’ll get deleted really quickly if there isn’t some sense of value emerging from the study.
  8. Meta-conclusion: perhaps start with the question: how does this give value the participant when the app is in airplane mode?
  9. On “pay to participate” – the first time I ever talked to @FearLoathingBTX, he immediately foresaw studies providing a “free” phone for participation, but cutting service off for low engagement. That is, sadly, definitely on track absent some intervention.

Related content and resources:

 


h

John Wilbanks

John Wilbanks is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.


SHARE