Using My HealtheVet (MHV) for Self-Care and to Prevent Complications in

Spinal Cord Injuries and Disorders (SCI/D)

Frances M. Weaver, Timothy P. Hogan, Bridget M. Smith

QUERI for SCI&

Center for Management of Complex Chronic Care

Edward Hines, Jr. VA HospitalHines, IL 60141-3030

2008 QUERI National MeetingPhoenix, Arizona

December 12th, 2008

Purpose of presentation

To describe the motivations, objectives, and methods behind a MHV research project at the Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI)

To enumerate the successes and barriers we encountered in the course of implementing this study

To offer some lessons learned for others who may be interested in MHV research

Team effort

SCI QUERI researchers

SCI/D services Chief and Deputy Chief Consultant Instruction Systems Specialist

MHV program office

Paralyzed Veterans of America (PVA)

SCI/D and the importance of self-management Between 225,000 and 300,000 people live with SCI/D in

the United States; over 25,000 receive care through VA

Over 50% of veterans with SCI/D have had their condition for at least 20 years; roughly 80% are at least 50 years of age

The nature of SCI/D necessitates patient participation in care. Self-management activities include but are not limited to Managing one’s bowel care Maintaining respiratory health Monitoring for and preventing pressure ulcers Managing mental health Maintaining equipment

(SCI QUERI, 2008)

Information use among people with SCI/D Individuals with SCI/D want information about

their condition and use a range of interpersonal and mass media information sources (Burkell et al, 2006; Edwards et al., 2002; Vaidyanathan et al., 2001)

The Internet is a fairly accessible resource in the SCI/D community (Hauber et al., 2002)

Findings suggest a health-related quality of life benefit for individuals with SCI/D who use the Internet (Drainoni et al., 2004)

Websites designed to provide information about SCI/D self-management issues are accessed by diverse users (Brillhart, 2007)

MHV condition and healthy living centers Part of the “Research

Health” feature of MHV where veterans can gather health information and learn about different health-related topics

Different centers include different content General & advanced info Self-management &

caregiver info Related links Online training

resources Fact sheets

Intended audience includes veterans, informal caregivers, interested others

Study purpose & objectives

The purpose of our project is to understand and facilitate use of MHV as a tool for self-management among veterans with SCI/D

Specific Objectives: Increase MHV enrollment among veterans with

SCI/D

Evaluate the use of an SCI/D condition-specific center and MHV by veterans with SCI/D

Understand how MHV and the condition center can facilitate self-management among SCI/D veterans

Study methods

Stage One – raising awareness, promoting enrollment and in-person authentication among SCI/D veterans at two VA facilities (Hines and St. Louis)

Stage Two – mail-based survey of veterans to determine MHV enrollment status, understand health information seeking, and assess use of the SCI/D condition center and MHV

Stage Three – semi-structured interviews with a smaller sample veterans recruited from those who completed a survey to understand the role of MHV and the condition center in self management

In December 2007, proposal submitted to secure funding for these activities via the QUERI rapid response project (RRP) mechanism

Developing an SCI/D condition center

Initial content of the condition center Consumer guides developed by the Consortium for Spinal

Cord Medicine (CSCM) and produced by the PVA for self-management topics, including bowel management, pressure ulcers, and depression

Respiratory vaccine video developed by SCI QUERI Checklists, information sheets for disaster preparedness Contents would continue to be expanded over time

With effort from MHV program office, condition center “straw man” was created

Assumed that the condition center would be operational before the various stages of the project began

Roadblocks

Content development issues Posting consumer guides on MHV

Copyright protection; ownership issues Contractual requirements

Linking to the consumer guides through MHV Federal/VA policy on linking to sites that solicit

funds

Study design and data collection issues Office of Management and Budget (OMB)

requirements and approval process Conflicts between OMB approval time frames for

surveys and interviews and the “rapid” aspect of RRPs

Facilitating resources and current status Supportive colleagues and dialogue

Ongoing conversations with the MHV program office and PVA to resolve content development issues Current solution involves the creation of a

separate website by PVA to host the consumer guides

MHV will link directly to this separate site Condition center expected to go live in early

2009

Study design and data collection issues CPRS flag will allow us to identify MHV users Working alone versus collaboratively

Cross-cutting efforts and economies of scale

Some lessons learned

Providing convenient access to evidence-based health and self-management information in a web-based environment could be of significant benefit to all our veterans

MHV is new and evolving Barriers are being identified and policies are being

developed

MHV program office is eager to work with researchers Goal is to make MHV useful for research as well as

for clinical care and practice

Acknowledgements and references Special thanks to the MHV Program Office, PVA, and SCI/D

Services for their ongoing commitment to this project

Contact us with any questions: Frances.Weaver@va.gov, Timothy.Hogan@va.gov, Bridget.Smith@va.gov

ReferencesBrillhart, B. (2007). Internet education for spinal cord injury patients: Focus on urinary

management. Rehabilitation Nursing, 32(5), 214-219.Burkell, J.A., Wolfe, D.L., Potter, P.J., & Jutai, J.W. (2006). Information needs and information

sources of individuals living with spinal cord injury. Health Information and Libraries Journal, 23, 257-265.

Drainoni, M., Houlihan, B., Williams, S., Vedrani, M., Esch, D., Lee-Hood, E., & Weiner, C. (2004). Patterns of Internet use by persons with spinal cord injuries and relationship to health-related quality of life. Archives of Physical Medicine and Rehabilitation, 85, 1872-1879.

Edwards, L., Krassioukov, A., Fehlings, M.G. (2002). Importance of access to research information among individuals with spinal cord injury: Results of an evidence-based questionnaire. Spinal Cord, 40, 529-535.

Hauber, R.P., Vesmarovich, S., Dufour, L. (2002). The use of computers and the Internet as a sournce of health information for people with disabilities. Rehabilitation Nursing, 27(4), 142-145.

Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI). (2008). QUERI fact sheet: December 2008.

Vaidyanathan, S., Glass, C.A., Soni, B.M., Bingley, J., Singh, G., Watt, J.W.H., & Sett, P. (2001). Doctor-Patient communication: Do people with spinal cord injury wish to receive written information about their medical condition from the physicians after an outpatient visit or after a readmission in the spinal unit? Spinal Cord, 39, 650-653.