Bringing Researchers, Families/ Patients, and Providers Together to Improve Asthma Care. Panelists: Flory Nkoy, MD, MS, MPH (Principal Investigator); Joseph Johnson, MD (PCP Stakeholder); Jordan Gaddis (Parent Stakeholder) Presented at the 11th Annual HSR/ PCOR Conference: Partnering for Better Health: Bringing Utah's Patient Voices to Research 2016

1. Bringing Researchers, Families/
Patients, and Providers Together
to Improve Asthma Care
March 15, 2016
Flory Nkoy, MD, MS, MPH (Principal Investigator)
Joseph Johnson, MD (PCP Stakeholder)
Jordan Gaddis (Parent Stakeholder

2. Overview
 Pediatric Asthma/Electronic-AsthmaTracker (e-AT)
Development and Stakeholder Engagement: Dr. Nkoy
 Participation of Parents as Research Partners and How
they Shaped Asthma Research: Jordan
 PCP Perspectives, Use of e-AT in Clinic, Family
Engagement and Asthma Care: Dr. Johnson
 Impact and Conclusion: Dr. Nkoy

3. Introduction (Pediatric Asthma)
 Most common pediatric chronic illness
 9 million children age < 18 years had asthma (2012)
 Frequent asthma attacks and ED/hospital admissions
 640,000 ED and 456,000 hospital admissions (2007)
 High readmission rates (up to 50% at 12 months post
discharge) and high cost (15.9 billion/year in total costs)
 Suboptimal ambulatory asthma control

4. Suboptimal Ambulatory Asthma Control
 68% of children and 78% adults not well controlled
(Carlton, 2005).
 59% uncontrolled asthma (Chapman, 2008).
 56% poorly controlled asthma (Bloomberg, 2009).
 75% not well controlled asthma (2011 ED admissions at
PCH).
 Inconsistency between patients' perceptions and NIH
criteria: 71% vs. 29%. (Murphy, 2012).

5. Evidence-Based Care and Challenges
 Frequent assessments of asthma control and timely
intervention can lead to optimal control (Bateman, 2007)
 Current care model not designed for ongoing monitoring
 PCPs lack tools, resources and incentives to monitor
patients outside clinical encounters
 Families struggle to identify early signs of worsening
asthma control and lack an effective tool
 Current asthma care model is reactive, focuses on
managing asthma attacks

6. Ambulatory Asthma Care and Challenges
MD
Guidelines/
Tools
Quality
Measures
ACO
Rx
Patient
Environment
WAPSymptoms
Rx
Asthma attack

7. Asthma Control Test (ACT)

8. Asthma Tracker (paper version)

9. Understanding of Patient’s Needs

10. Early Parent Involvement: Paper-AT
 Conduct focus groups with 5 parents
 Useful in helping parents manage their child’s asthma
 No real-time reminders or feedback
 No quick access to PCP if asthma is not well-controlled
 Parents felt guilty if child’s asthma in the red zone
 Suggested an electronic version and provided a wish list

11. Parent Involvement: Development of the e-AT
 Our team (w/o parents) created a list of requirements
 Combined our requirements with parent wish list
 Determined functionalities for the e-AT (users/PCPs)
 Developed the first e-AT prototype
 Brought the prototype back to parents/children for their
input

12. Parent Involvement: e-AT Usability
 Participants (10 parents and 4 children)
 e-AT was found useful and easy to use
 e-AT can improve children’s asthma care
 Identified issues with the e-AT and suggested changes
 Fixed problems, made changes and finalized the e-AT

13. Parent Suggestions and Concerns
 Concerns about lack of motivation for sustained use
 Wanted real-time reminders to facilitate ongoing use
 Wanted real-time feedback/alerts to allow immediate actions
 Concerns about lack of child’s PCP active involvement
 Concerns about low score (Red Zone)
 Concerns about the effectiveness of the e-AT

14. Parent Concerns and Remedial Actions
Suggestions Actions
Motivation for sustained use
Added education and incentive
mechanisms
Real-time reminders Added real-time email/text reminders
Real-time feedback/alerts
Added real-time recommendations and
alert messages to parents
Needs to involve PCPs
Created a Clinic Dashboard with real-
time alert mechanism to clinics
Concerns about low scores
Added a comment field to record
reasons (e.g. trigger exposure)
Needs for a mobile version Developed a mobile friendly version
Question about effectiveness AHRQ grant/PCORI study

15. e-Asthma Tracker (Web Version)

16. Weekly Asthma Control Questionnaire

17. Current Asthma Therapy and Compliance

18. Incentive

19. Primary Care Provider Involvement
Alerts

20. Mobile Web Version

21. Frequent assessments of
asthma symptoms
New Ambulatory Asthma Care Model
MD
Rx
Quality
Measures
ACO
Guidelines
Patient
Environment
WAPSymptoms
Rx
Ongoing
communication
Asthma attack
E-Asthma
Tracker

22. Parent Engagement: PCORI Study
1. Assess the effectiveness of the new ambulatory care model
(vs. current care), by comparing outcomes at the child,
parent and clinic
2. Determine whether the effect on child outcomes varies
across parent characteristics (health literacy, insurance and
frequency of use)
3. Determine factors (demographic, socio-economic,
behavioral, and technology) associated with sustained
participation in asthma self-management
Redesign Ambulatory Care to Improve Asthma Control

23. My
Experience

24. Parent Stakeholders
 I was asked to participate in this study along
with four other parent stakeholders.
 All five moms have children with asthma,
some more than one, of varying ages.
 Living with asthma was relatively new to me,
and I have learned a lot through this
experience.

25. Kick-off Retreat
 Parent stakeholders, researchers, providers,
and other stakeholders gathered to discuss
the study , define criteria, and prioritize needs
 We got to know each other and learn about
what motivated us to participate in this study
 Planned to hold quarterly stakeholder
meetings with entire group, monthly sub-
group meetings
 Equal partnership and no hierarchy.

26. How Parent Involvement Shape Research?
Suggestion Action Taken
Helped Identify Study Questions
Interested in e-AT impact
Assess factors associated with sustained use
Helped Identify Meaningful
Outcome Measures
Night time symptoms (Asthma quality of life)
Assessment of caregiver daily work interruptions
Importance of avoiding ED/Hospital Admission
Asked to modify Study Design
Requested all patients to receive the intervention (e-AT)
Changed from Cluster Randomization to Baseline Across
Design
Asked to Modify Participant Age Changed age criteria from 2-11 to 2-17 years of age
Helped in Clinic Enrollment
Shared about their experience with the e-AT
Encourage clinic to participate
Help in Participant Recruitment
and Retention
Designed enrollment letter for clinics
Developed Facebook page
Developed user Newsletter
Participated in youtube videos
Help in Dissemination of the study Submitted and presented abstracts at conferences

27. Parent Newsletter

28. Experience Using e-AT for My Child
 When son’s breathing worsened during the
week, I completed the asthma tracker and
realized he was in the yellow zone
 Within hours, his pediatrician’s office called to
discuss his breathing
 We were able to begin oral prednisone right
away before things got worse (possibly
avoiding a serious visit to the ER)

29. Stakeholder Stories
 Two-sided. Made treatment more personal and
incorporated patients’ views, not just clinicians
 We appreciated the friendship and support from
other moms
 Parent support is something you don’t get from the
clinical experience, and we learn so much from one
another
 We appreciate proactive calls from the clinics.
 Clinic visits proved a useful way to learn about
how the tracker was actually being used

30. Primary Care Provider/
Clinic Experience

31. My history with asthma research
 Member of Intermountain Asthma Workgroup
 Standardize inpatient management of asthma across
Intermountain hospitals
 Inpatient focus
 e-Asthma Tracker intro
 Paper tracking with patients discharged from PCH
 Outpatient focus
 My role on the PCORI project team
 Physician stakeholder
 Parent stakeholder recruitment
 Physician recruitment in Utah County

32. Asthma Exacerbation In Vivo
Courtesy of Dr. Michael Rich’s Video Intervention/Prevention Assessment (VIA) study
Center on Media and Child Health, Boston Children's Hospital

33. Asthma care in the clinic
 Prior to e-Asthma Tracker
 Asthma Control Test
 Patient/parent recall of symptoms
 Asthma Action Plan
 Introducing the e-Asthma Tracker
 Patients with Persistent Asthma
 Preparing the patients before starting
 Incentive

34. e-Asthma Tracker in the Clinic
 Positives
 Patients understood their symptoms
 Patients understood their asthma medications
 Patients understood need to take controller
medications
 Patient comments very helpful
 Follow-up visits were more useful
 Surveys were a reminder to take care of their
asthma
 Proactive care of problems

35. e-AT in the Clinic--Examples

36. e-AT in the Clinic--examples

37. e-AT in the Clinic—Patient #1

38. e-AT in the Clinic—Patient #1 Comments

39. e-AT in the Clinic—Patient #2

40. e-AT in the Clinic—Patient #2 Comments

41. e-AT in the Clinic--examples

42. Patient-Centered Research
 What I have learned
 Patients/caregivers want to understand their
disease better
 They want their disease to be controlled
 They want to live their life without the restrictions
of a chronic disease
 They have great ideas that we might not think of
 Partnering in care brings the greatest satisfaction
to all involved
 Physician Involvement is critical for compliance

43. Impact

44. Impact on Asthma Readmissions
0.000.250.500.751.00
0 100 200 300 400
No Days since Hospital Discharge
Non Users Users
Time to First (ED/hospital) Readmission (adjusted for age and race)

45. Impact on Asthma Admissions
26.7%
18.1% 17.7%
32.1%
14.3%
17.3%
5.1%
19.8%
0%
5%
10%
15%
20%
25%
30%
35%
AT Users* NonUsers (Control) FrequentUsers* InfrequentUsers*
Prior Post

46. Asthma Admissions: Medicaid Patients
28.4%
26.7%
33.3%
25.9%
16.0%
29.3%
3.7%
22.2%
0%
5%
10%
15%
20%
25%
30%
35%
AT Users NonUsers (Control) FrequentUsers* InfrequentUsers
Prior Post

47. Participant Compliance: PCORI Study
0.00
0.25
0.50
0.75
1.00
1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39
Week
Figure 3: Proportion of Frequent Users: > 60% compliance
Frequent users only

48. Thank you from a Parent
“I have enjoyed tracking my son's asthma because it has
helped me recognize patterns and triggers as well as stay
on top of his medication. This has forced me to record and
notice things I would have liked to have known when he
was first diagnosed. Thanks for allowing us to be a part of
the study. I feel guilty when you keep sending Amazon
cards because I feel like the real benefit is knowing we've
got the asthma under control”.
Parent of a child with asthma currently using the e-AT

49. Conclusions
 Traditionally research includes only scientists and other
research-related professionals
 Patient-centered research approach includes nontraditional
stakeholders in all steps (planning, conduct & dissemination)
 Stakeholders (persons with an illness or caregivers/family
members or a health care provider) have valuable expertise
 Involvement of stakeholders can:
 Lead to greater participant engagement in research.
 Lead to meaningful study participant involvement
 Make research more useful and trustworthy
 Lead to greater uptake of results.

50. Acknowledgments (PCORI Stakeholders)
NAME ROLE
Flory Nkoy, MD, MS, MPH Principal Investigator
Bernhard Fassl, MD Co-Investigator (Clinic/physician education)
Bryan Stone, MD, MS Co-Investigator (Clinic/physician education)
Vicki Wilkins, MD, MPH Co-Investigator/Parent Engagement
Chris Maloney, MD, PhD Co-Investigator
Eun Hea Kim, BA Clinical Research Coordinator
Justin Poll, PhD Parent Engagement (Surveys and Focus groups)
Karmella Koopmeiners, RN, MSAsthma Education and Clinic Outreach
5 Parents Parent Stakeholders
Joseph Johnson, MD Primary Care Provider Stakeholder
Utah Asthma Program Utah Department of Health Stakeholder (Kelli Baxter)
Select Health Insurance Stakeholder
Advisory Committee
Brent James, MD, Mstat; Ed Clark, MD; Derek
Uchida, MD; Lucy Savitz, PhD; Wayne Cannon, MD;
Carolyn Reynolds, RN, MS

51. Thanks