Evidence-based Synthesis Program 

(ESP)

Mobile and Internet Approaches for 

Supporting Non-Professional 

Caregivers: A Systematic Review

Edward Dyer, MD

Devan Kansagara, MD, MCR

Keith McInnes, ScD, Msc

Michele Freeman, MPH

Susan Woods, MD, MPH

Mobile Health at the VA

Kathleen Frisbee MPH PhDc

Neil Evans MD
Evidence-based Synthesis Program 

(ESP)

Program Overview

• Sponsored by VA Office of Research & Development, Quality 

Enhancement Research Initiative (QUERI)

• Provide timely and accurate syntheses/reviews of topics 

identified by VA clinicians, managers and policy-makers, as 

they work to improve the health and care of Veterans

• Builds on staff and expertise of AHRQ Evidence-based 

Practice Centers (EPC). Four EPCs are ESP Centers: 

o Durham VA Medical Center

o VA Greater Los Angeles Health Care System

o Portland VA Medical Center

o Minneapolis VA Medical Center.
Evidence-based Synthesis Program 

(ESP)

• Provide evidence syntheses on important clinical practice 

topics relevant to Veterans, and these reports help:

o develop clinical policies informed by evidence; 

o Implement effective services to improve patient outcomes and 

support VA practice guidelines & performance measures; 

o guide the direction for future research to address gaps in 

clinical knowledge.

• Broad topic nomination process – e.g. VACO, VISNs, field – 

facilitated by ESP Coordinating Center (Portland) through 

online process: 

 http://www.hsrd.research.va.gov/publications/esp/TopicNomination.cfm
Evidence-based Synthesis Program 

(ESP)

• Steering Committee represents research & operations (PCS, 

OQP, ONS, VISN), provides oversight and guides program.

• Technical Expert Panel (TEP)

o Recruited for each topic to provide content expertise.

o Guides topic development; refines the key questions.

o Reviews data/draft report.

• External Peer Reviewers & Policy Partners

o Reviews and comments on draft report

• Final reports posted on VA HSR&D website and disseminated 

widely through the VA. 

http://www.hsrd.research.va.gov/publications/esp/reports.cfm
Overview 

o Introduction – rationale for evidence synthesis

o Systematic review

 Methods

 Results 

o VA research in health IT

o Clinic in Hand overview

o Questions 
Background: Caregivers and 

Health IT

• 34 to 52 million adults function as 

caregivers at some point every year

• 70% to 80% of caregivers seek health 

information online

• 26% seek online peer support with other 

caregivers

AARP Public Policy Institute. November, 2008

Pew Internet & American Life Project, May 12, 2011
Technology use is rapidly rising

• In 2010, 78% of US adults had internet 

access compared to 46% in 2000

• Veterans and non-Veterans use the 

internet at similar rates

• Most adults have cell phones (83%)

o 77% among those with income < $30K

o 56% among those > age 65

 But only 16% use phone to access internet

Informatics in Primary Care. 2010;18(1):59-68

Pew Internet & American Life Project. April 13. 2012
VHA is committed to increasing access 

to consumer health information 

technologies (CHIT) for caregivers of 

chronically ill or disabled Veterans
Review Objectives

• Identify studies of consumer health 

information technologies designed for 

non-professional caregivers

• Examine usage of CHIT applications 

• Examine effects on caregiver burden and 

patient outcomes

• Identify gaps in literature
Key Question 1

How does the use of CHIT by nonprofessional caregivers of adult patients 

with chronic illnesses or disability, or by 

such patients who rely on a non-professional 

caregiver affect caregiver and patient 

outcomes? 
Key Question 2

What lessons can be learned from studies 

evaluating CHIT that specifically target 

the parents/caregivers of children?
Key Question 3

What are the major gaps in the CHIT 

literature with regards to technology 

development, availability, and/or 

evaluation? 
Methods: Study Selection

Studies Included:

• Enrolled non-professional caregivers of 

adults or children

• Reporting caregiver outcomes

• Caregiver-facing interactive technology 

(+\- patient-facing)

• No limits based on device or platform
Methods: Study Selection

Excluded Studies:

• Non-interactive technologies (education 

material or general information)

• Involving only telephony, interactivevoice-response, or synchronous telehealth

• Using fixed home-monitoring technologies
Intervention Taxonomy 

• Education/skills

• Self-care

• Peer-to-peer communication

• Caregiver-to-professional communication

• Patient-to-caregiver communication

• Systems transactions

• Reminders
Search 

Multiple databases

o MEDLINE, Embase, IEEE Xplore

o AMIA Symposium Proceedings

o Healthcare Information and Management 

Systems Conferences

o Med 2.0 and Health 2.0
Results: Literature Flow
Results: Adult Literature

• 31 studies described 22 interventions

• Majority offered educational content 

• Several communication modalities

o Online peer support

o Online access to providers

o General disease information and education
Results: Adult Literature

• Small study size, variation in outcomes 

measured, methodologic weaknesses and 

diversity of interventions make 

assessment of health outcome or 

utilization effects difficult

• Some broad themes are apparent
Impact of Caregiver CHIT

• Caregiver outcomes: broad variety of 

metrics, no firm conclusions

• Patient outcomes: only 3 studies

o Computerlink, Schizophrenia Guide, Dew 2004

• Care Utilization outcomes

o Trend toward reduced admissions in VA (Glynn 2010)

o Decreased ER visits and admissions (Caring~Web)
CHESS Intervention

Comprehensive Health Enhancement 

Support System

• Objective: improve lung cancer 

caregiver coping strategies

• Intervention: web peer support, expert 

care, training.

• RCT: n=285, duration 2 years

o Enrolled patient-caregiver dyads

o Controls: received laptop and list of websites.
CHESS Intervention: Results

• Improved coping compared to controls

o “Brief Cope” 5-point Likert scale

• Mediated through bonding measured by 

sharing feelings, emotional support, etc.

• Speculated increased community with 

formal/closed membership groups, around a 

common patient condition
VA intervention: Glynn 2010

• Objective: Improve patient-caregiver 

relationship stress in Veterans with 

schizophrenia

• Intervention: web education and scheduled 

facilitated online support group

• Pre-post study for feasibility: 

o 26 families in intervention group vs. 16 family controls

o Concern for how to manage emergencies adequately
VA intervention: Glynn 2010

Results:

• Family distress did not change over time nor 

was different between groups

• Caregiver-patient stress improved over 

time, but only measured in treatment group

• Trend towards decreased admissions in 

treatment group
Caregiver’s Friend

• Objective: improve health and stress 

ofcaregivers of patients with dementia 

• Intervention: tailored web education 

based on a pre-intervention questionnaire

• RCT: n=299, duration 30 days

o Waitlist controls

o Average use: 32 minutes but...
Caregiver’s Friend

Only 32 minutes resulted in improved 

(compared to controls), self reported:

o Caregiver self-efficacy, 

o Intention to get support, 

o Caregiver gain, stress, strain, 

o Caregiver depression and anxiety.
Pediatric Caregiver Interventions
Stockwell 2012

• Objective: increase flu vaccine rates 

through weekly tailored text messaging

• RCT: n = 7,547

o Low-income population

• Vaccine rates improved

o 42.6 v 39.9%, p = 0.001
Miloh 2009

• Objective: decrease biopsy-proven 

rejection in pediatric liver-transplant 

patients

• Pre-post study: n = 41

• Intervention: automated text messaging 

reminding children then parents to take 

immune meds

• Bx-proven rejection improved over one 

year: 12/41  2/41, p = 0.02
General themes
Peer Support

• Most-used and valued component

• Cited benefits: 

o Convenience of asynchronous communication

o Access to a greater diversity of experiences

o Anonymity 

o “Closed” groups may increase a sense of 

relevance and community compared to “open” 

such as Yahoo groups, AOL groups.
Peer Support

• Cited challenges: 

o Message threads off-topic

o Not equivalent to face-to-face support

o Inappropriate for some caregivers?

o Caregiver and patient need separate forums

• Of note:

o Privacy/security was not a concern for users

o “Flaming” was rare, potentially obviating need for 

moderators
Online access to experts 

• Benefits reported by caregivers:

o Near-immediate availability for questions 

o Increased comfort and empowerment

• Of note:

o Adult-interventions typically used email

o Pediatric-interventions typically used SMS/texting

o Expert-care sometimes provided with access to 

Q&A databases
Generalizability and Usage

• 45% of those approached declined to signup for a 

CHIT intervention – Chiu 2005

• 60% attendance at “required” online classes fell to 

30% for volunteer sessions – Glynn 2010 (VA study)

• 9 of 21 families of a child with cancer logged on to 

CHIT intervention – Ewing 2009

• 19 of 40 users dropped out – Glueckaulf 2004
Usage

• Satisfaction often high among users

• Wide variety of usage frequency:

o 20x/month – Vehvillainen 2002

o 1-2 hours/week – Pierce 2009 (Caring~Web)

o 1x/month by 40% of users – Dew 2004

• Benefit may occur even with limited use

o Beauchamp 2005 (Caregiver’s Friend)
User experience

• Some studies described technical barriers 

to intervention accessibility

• Barriers may be more pronounced in older 

caregivers
User experience

CHIT provides opportunity to tailor media to 

accommodate a diversity of users:

o Vision/hearing/dexterity challenged

o Language barriers

o Attention span (children, ADHD)

o Preferred learning styles (text, audio, video, active)

The amount of technical training necessary for 

users to optimally use CHIT is unclear.
Gaps in Literature

CHIT is a relatively new field: 

o Only 7 studies were designed to evaluate 

health outcomes.

o Most were in early-development or pilottesting (15 of 22 interventions).

o Few studies analyzed outcomes separately for 

caregiver and patient users. 
Gaps in Literature

• Few interventions focused on improving 

patient-caregiver communication

• Few had health system transactions such as 

Rx refill, request appointment, bill-pay..

• No studies offered contextual understanding 

of how caregivers use CHIT day-to-day

• No studies evaluated how CHIT complements 

existing educational and support services
Future directions

• Involve end-users in design of CHIT

• Perform formal usability testing in CHIT 

implementation

• Develop best-practices for technology 

implementation

• Provide peer-peer support groups, access 

to expert advice, interactive modules

• Evaluate caregiver AND patient 

experiences/outcomes by enrolling dyads
Limitations

• Evaluation of CHIT is relatively new and 

technology is changing quickly

• Reviewed technologies targeted at 

caregivers; technologies targeted at other 

populations could be adapted

• Lack of a common taxonomy for CHIT may 

have limited search for relevant literature.
Evidence-based Synthesis Program 

(ESP)

Full report and cyberseminar presentation is available on ESP website: 

http://www.hsrd.research.va.gov/publications/esp/
Perspective from a VA researcher

• “Team sport”

• Caregiver burden monitoring

• Texting to create 3-way dialog

• Caregiving and care-recipient style 

assessment (CCRAS)

• Training 

• Lessons from ongoing Caregiver 

Study 
MOBILE HEALTH AT THE U.S. DEPARTMENT OF VETERANS AFFAIRS

OFFICE OF INFORMATICS AND ANALYTICS (OIA) / CONNECTED HEALTH

NEIL C. EVANS, MD AND KATHY FRISBEE, MPH, PhDc- CO-DIRECTORS

 

FEB. 25, 2013
VETERANS HEALTH ADMINISTRATION

Connected Health

1 

 

 

 TECHNOLOGY

All Eyes on the 

Same Information 

Better Access 

through 

Improved 

communication 

Improved 

Provider 

efficiency

Patient 

empowerment 

through 

personalization

Enhanced 

Collaboration 

& Coordination
VETERANS HEALTH ADMINISTRATION

Technologies Coordinated by Connected Health 

• Mobile Health  Today’s Focus 

• TeleHealth

• My HealtheVet (PHR) 

• Kiosks

• Patient-Facing Web Applications

2 
VETERANS HEALTH ADMINISTRATION

• With 5.9 billion mobile-cellular 

subscriptions, global 

penetration reaches 87%, and 

79% in the developing world.

• Mobile-broadband 

subscriptions have grown 45% 

annually over the last four years 

and today there are twice as 

many mobile-broadband as 

fixed-broadband subscriptions

Note: *Estimate

Source: ITU World Telecommunication/ICT 

Indicators database

3 
VETERANS HEALTH ADMINISTRATION

Mobile Health Starting to Come of Age

4 

• Add additional data about Veterans 

with cell phones 
VETERANS HEALTH ADMINISTRATION Institutionalized Care

20+ Million 

8 Million 

5 Million 

< 1 Million

Veterans Impacted

Patient Facing Mobile Health – An Engagement Model 

of Health Care Delivery, Not A Treatment Model

5 

Telehealth

Home Based Care

Outpatient Care
VETERANS HEALTH ADMINISTRATION

Mobile Health

Extending Health Care Beyond Traditional Visits

The gold dot represents the average number of minutes (100) a 

patient spends with a provider per year and the white represents the 

525,600 minutes in a year 

6 
VETERANS HEALTH ADMINISTRATION

VA Mobile Strategy Timeline

2011 2012 2013

Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4

HEALTHCARE TEAM-FACING 

VETERAN-FACING 

CENTRAL MOBILE DEVICE MANAGEMENT AND CLOUD HOSTING

New Cloud MDM

Begin VA Mobile - Interim MDM - Initial Cap 1500 Mobile Devices 

Mobile 

Validation

Field Enterprise App Library

Dedicated Cloud Environment Hosting – FISMA High Impact Certified 

Mobile App Development Environment

Security Test and Certification Authority to Operate (ATO)

Certification and Governance

Veteran Mobile Credentialing Services

Delegation Authorization

Family Caregiver Pilot

Caregiver Evaluation Study

Texting for Health + New Apps

Provider 

Mobile Pilot Mobile Display of Patient Data

Mobile Imaging

Nursing Apps

Mobile Browser Pilot

Scheduling App
VETERANS HEALTH ADMINISTRATION

DC Pilot - Summary of Care App – Lab Results
VETERANS HEALTH ADMINISTRATION

New Healthcare Team-Facing Mobile Apps

• PatientViewer (expansion) 

• Antibiotic Resistance

• Mobile Vista Imaging

• Surgical Pathology/Cytology

• Progress Notes (enter)

• Wound Care

• Immunization Campaign

• Secure Messaging

• Consult Orders Management

• Coumadin Clinic

• Mobile Radiology Imaging

9 

• Radiology Orders 

Management

• Laboratory Orders 

Management

• Medication Orders 

Management

• Patient Consent

• Health Data Reconciliation

• ICU

• Facility and Bed Locator

• Safe Woman Prescribing

• Suite of Nursing Apps
VETERANS HEALTH ADMINISTRATION

Family Caregiver Pilot Apps

10

• Pain Coach

• Care4Caregiver 

• eJournal

• RxRefill 

• Summary of Care

• Appointments

• iCal Integration 

• Mobile Secure Messaging

• Post-Traumatic Stress Disorder (PTSD) Coach

• Health Advocate

• Notifications

Suite of Apps Pre-loaded on iPads and Distributed to 1,120 Family 

Caregivers and their post 9/11 Seriously Injured Veterans

Mobile Health Family Caregiver Pilot Evaluation Study

Primary Quasi-Experimental Study Longitudinal Cohort Study Qualitative Study
VETERANS HEALTH ADMINISTRATION

New Patient-Facing Mobile Apps

• Texting for Health

• Patient Health Inventory

• Caring for Women Veterans

• Preconception/Prenatal

• Maternity Tracking

• Veteran Health Competition

• Biosurveillance Reporting

• Subscription Service for Biometric Monitoring

11
VETERANS HEALTH ADMINISTRATION

Example of “How I Feel” – in Personal Health Inventory 

App Available for Providers to View Data

12
VETERANS HEALTH ADMINISTRATION

VA Mobile Launchpad

13
VETERANS HEALTH ADMINISTRATION

Application Development Foundation

• Security and accreditation

• Pilot infrastructure 

• Operationalize

• Enterprise framework

 

• Application development & distribution

• Application testing & development pipeline

• Ongoing development agility

App 

Development

Infrastructure 
VETERANS HEALTH ADMINISTRATION

It’s about Security

1 

All traffic is single, 

double, or triply 

encrypted

2 

Sensitive data does not 

persist on devices or

uses FIPS encryption at 

rest

3 

Read only (to start)
VETERANS HEALTH ADMINISTRATION

VA Mobile Framework 

• VA Core Cloud 

Hosted, FISMA High 

Certified 

• Data moves through 

secure encrypted 

tunnels

• TATO

• Inside VA’s Network
VETERANS HEALTH ADMINISTRATION

Mobile Application Environment

• Common Dev Tools

• Common 

Services/Test Systems

• Dev Knowledge Base

• Project Management 

Tools

• Production 

Environment

VA’s Dedicated 

Core Cloud 

Environment
VETERANS HEALTH ADMINISTRATION

VA Mobile App Certification Process

Reviews for:

 Business ownership commitment (Governance) 

 Aligned with VA business objectives (Governance) 

 Sustainment plan (Governance) 

 Usability and User Interface Testing 

 VA branding 

 Data and Terminology Standards Compliance 

 Security 

 Privacy 

 System Performance Impact Assessment 

 Patient Safety Assessment & Functional Testing 

 508 accessibility 

 Clinical review for medical Apps 

 Help screens 

 Software Code Review (Independent Verification & Validation) 18

ALL VA Apps must 

be certified before 

posting on App stores 
VETERANS HEALTH ADMINISTRATION

Contact Information

19

Neil C. Evans, MD

Co-Director, VHA Connected Health

VA Central Office, Washington, D.C.

Neil.Evans@va.gov. 

Kathleen Frisbee

Co-Director, VHA Connected Health 

VA Central Office, Washington, D.C.

Kathleen.Frisbee@va.gov