Key points from REG Technologies Working Group Meeting held in Amsterdam in September 2015.

1. DATE: SATURDAY SEPTEMBER 26TH
VENUE: Wyndham Apollo Hotel, Amsterdam
ROOM: Boardroom
TIME: 11:00AM-13.00PM
CO-CHAIRS:
Alexandra Dima: Faculty of Social and Behavioural Sciences, University
of Amsterdam, Amsterdam, The Netherlands
Richard Costello: Associate Professor Medicine, RCSI, Consultant
Beaumont Hospital, Dublin, Ireland
TECHNOLOGIES WORKING
GROUP MEETING

2. Agenda

3. Meeting Objectives
• Agree terms of reference for the group
• Agree practical implementation steps for small,
seed projects
• Discuss and agree 1-2 longer-term projects for
the group to support

4. Terms of reference for the group
11.00-11.15AM
What will we be doing…

5. Terms of reference: scope
• Technology-based solutions (TBS): designed to Including (but
not limited to):
o Devices
o Apps
o Web-platforms.
• Technology purpose:
o Monitoring (e.g. adherence and medication usage)
o Behavioural change
• Geography: International / global
• Disease area: Chronic respiratory conditions, specifically, but not
limited to obstructive lung diseases, i.e. asthma and chronic
obstructive lung disease (COPD).

6. Terms of reference: objectives
• Explore generic questions associated with respiratory TBS, e.g.:
o Demand / user need; Usability; Effectiveness; Impact; Storage; Standardised,
optimised development
• Work collaboratively with other REG working groups to support research activities
with specific technology-based components
• Curate and publish information on the current knowledge & evidence available on
TBS for chronic respiratory conditions
• Identify unmet research needs in relation to TBS for chronic respiratory conditions
• Work with aligned multi-disciplinary groups to share and develop knowledge for
optimising the utility and ethical use of TBS for chronic respiratory conditions and
related data
• Providing guidance, in collaboration with wider REG working groups, on
opportunities to optimise the research utility of data sets enabled by technology-
based solutions (e.g. warehousing, storage, coding, anonymisation).

7. Unique perspective of the group
• REG collaborators have experience in addressing
practical challenges within clinical practice.
• Through REG there is an opportunity to fit the
technology-based solution to the needs of the user
(rather than fitting an engineering-derived solution to fit a
clinical need).
• Position the group as a resource and source of guidance
for people who are thinking about developing a
technology – what is the “recipe” (similar to that for drug
development) that you should follow to develop a TBS?

8. Terms of reference

9. Operationalizing Initial Study Ideas
11.15AM-11.45PM
Let’s get started…

10. Overview of initial ideas
• Development of technology-based solutions (TBS):
evaluating and describing current development practice
• Changing behaviour: how should health information be
fedback to change patient behaviour (literature review)
• Patient preference: optimising TBS interfaces for older
people with chronic respiratory diseases
• Stakeholder perceptions: attitudes towards smart
inhalers

11. Development of technology-based solutions
Current Practice
• Concept: Explore the optimum way to feedback TBS-
generated health information to change patient behaviour
• Nature of activity: Market Research
• Grant Opportunities:
o Wellcome Seed Funding explored as an opportunity –
conclusion = unlikely.
o Alternative source required
• Status: Multiple informal discussions with technology
developers already conducted by John Blakey

12. Using TBS to change patient behaviour
Patient “Education”
• Concept: Drawing on existing literature: how should health
information be feedback to (positively) change patient
behaviour?
• Nature of activity: Systematic review
• Grant Opportunities:
o Research / Knowledge Transfer Fellowship within/between current
collaborator group
• Status: Preliminary concept drafted; fellowship opportunities
to be explored

13. User Need & Preference
• Concept: Optimising TBS interfaces for older people with chronic
respiratory diseases:
o Device (tablet, computer, e-reader); Text size & contrast;
Information / data format (graphs, numbers, video); Navigation
o Outcomes: speed of use; accuracy of use; user acceptability;
knowledge retention
• Nature of activity: Prospective patient-centred comparative
effectiveness research
• Grant Opportunities: Doctoral and PhD post
• Status: Preliminary concept drafted; target dates for posts to be
explored among the group

14. Preliminary (REG-participant) data from Sam Howard’s PhD
11.45AM-12.00PM
Perceptions of Smart Inhalers

15. Stakeholder perceptions
• Concept: An online tool to record what attitudes are
toward smart inhalers amongst users, researchers, and
practitioners (brief, can be anonymous)
• Nature of activity: Internet-based questionnaire
• Grant Opportunities: On-going PhD;
o REG shared questionnaire via the REG network (via
twitter, newsletter, website).
o 18 REG participants

16. Summary findings
Multi-stakeholder attitudes to smart inhalers suggests the following
perception of greatest risks / benefits:
• Benefits: provision of accurate adherence records; securing useful
research data; sense of a patient being “watched” can positively
improve patient behaviour/adherence; improved symptom control
• Risks: potential for “gaming” the device (e.g. button press not
reflecting actual activity); financial considerations – initial coasts and
replacement costs; who will clean and interpret the data (not a
traditional clinical role); potential to drive conflict between patient-
reported behaviour and clinician’s understanding of behaviour (as
informed by the technology)

17. Joining the debate…

18. ATS 2016 session proposal
• Concept: In the rapidly-evolving world of digitized medicine and
grown emphasis for the patient (and patient preferences) to guide
and individualize medical management, the session will consider the
new e- and m-Health solutions available within Respiratory
Medicine, and would aim to support managed release of such
devices, by informing and educating ATS delegates about the
medical, moral and ethical challenges, as well as opportunities, that
emerging technologies bring.
• Presentation titles:
o Get Smart: getting the most out of smart technologies
o Giving patients back the power
o Ubiquitous technologies – digital footprint – a step in which direction
o The Digital Panopticon – is feeling watched enough?
• Status: submitted; awaiting decision from the ATS

19. Call for wider research ideas
12.00-13.00PM
What next…?

20. Ideas put forward so far…
• Standard care with spirometry vs standard care with oscillometry for real-life
outcomes in asthma or COPD
o Ron Dundurand
• PatientsLIkeMe: starting technology development from the patient perspective
o Dan Poscover
• Horizon 2020: a standardised pathway for TBS development
o Group Discussion
• Application for a technologies ERS Clinical Research Collaboration or
taskforce
o John Blakey (remote)
• Other...?