“Integrating Electronic Technology in a Patient- and Family-Centered Clinical Model:

The Good, The Bad, and Lessons Learned”

Patricia Sodomka, FACHESenior Vice President, Patient- and Family-Centered Care, MCG Health, Inc.

Director, Center for Patient- and Family-Centered Care, Medical College of Georgia

Christine AbbottPatient Advisor, Family Faculty, MCG Health, Inc.

Institute for Family-Centered Care

3rd International Conference on Patient- and Family-Centered Care

Partnerships for Enhancing Quality and Safety

July 30 – August 1, 2007 // Seattle, Washington

Augusta Multiple Sclerosis Center Based at the Medical College of Georgia

Augusta, Georgia

Dr. Mary Hughes, Medical Director

1,500 patients enrolled

2,500+ visits/year

The Augusta Multiple Sclerosis Center:

A Patient Family Centered Care Odyssey

Institute of Medicine:Health Care in the 21st Century

10 Rules for Healthcare

Care is based on continuous healing relationships Care is customized according to patient needs and values. The patient is the source of control. Knowledge is shared and information flows freely. Decision making is evidenced-based. Safety is a system property. Transparency is necessary. Needs are anticipated. Waste is continuously decreased. Cooperation among clinicians is a priority.

Rule #3 – The Patient is the Source of Control

Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them.

The health systems should be able to accommodate differences in patient preferences and in encourage shared decision making.

The “AHA” Moment - 2001 What “we” wanted

Research A new building More doctors A “cure”

What the “patients and families” wanted Accessible bathroom Someone to return phone

calls Access to psychological

support Self management

support

MS Advisory Council

Transforming Episodic Medical Care The Chronic Care Model

Functional and Clinical Outcomes

The Problem

Limited resources

Need to prioritize interventions

Our Solution:Collaborative Care/Self Management

Psychology Services

Technology – My HealthLink

Exploring the Mind of MS“A Collaborative Approach to the Treatment of

Mental Health Issues in Multiple Sclerosis”

Mitzi Williams, MD – Neurology Resident, Future MS Fellow

Mary Hughes, MD – Director of Augusta MS Center

Lara Stepleman, PhD – Director of HIV and Multiple Sclerosis Psychological Services

• Up to 80% suffer from Depression• 7X higher suicide rate vs. general population

A Stimulus For Change

Identifying a Need

Improved recognition of mental health issues in patients

Increased availability of mental health services for patients and families

Utilizing those who are best able to provide these services

Collaboration

Key players involved:

Augusta MS Center

MS Center Patient Advisory Council

MCG Psychology program within Department of Psychiatry and Health Behavior

Participation

Design a solution that patients will utilize

Patient Input vital to program design

Providing a resource, not a punishment

MS Psychology Consultation Service

Goal Statement:

“The goal of the MS Psychological Services Program is to remove barriers to the emotional well-being of MS patients through convenient, compassionate, and coordinated psychological services provided during routine MS medical appointments.”

ECTRIMS (Madrid, 2006)• Predicting depression and anxiety in a multiple sclerosis clinic population: The

contributions of illness severity, illness management, and perceived cognitive impairment.

• Overcoming Mental Health Care Barriers for Individuals with MS: Innovations in Psychological Consultation.

ECTRIMS (Prague, 2007)• The development of an educational intervention for MS-related sexual intimacy

concerns. • Using problem-solving therapy to treat depression within the MS clinic setting. • Utilization of mental health services by MS centers in the US.

Journal of MS Care (2007) • Problem solving therapy for depression: A pilot intervention for MS care

settings. International Journal of MS Care, 9, p. 76. • MS psychological consultation: Addressing the mental health needs of

individuals with MS. International Journal of MS Care, 9, p.76.

Examples of MS Patient Research that Grew from the MS Psychology Program

The Missing Link

Aim Statement

“Empowering Patients Living with Multiple Sclerosis to Self-Manage Their Health”

The intent of this project is to improve the health of patients with MS by enabling them to partner with care providers in the management of their health care.

Our numerical goals for this work are:• 100% of patients enrolled in My HealthLink with documented self

management goals.• 80% of patients/families enrolled in My HealthLink will rate their level

of satisfaction with self management support as highly or extremely satisfied.

• 50% of patients/families enrolled in My HealthLink will continue to use the program 3 months after their initial enrollment date.

The Business CasePremise

“Empowering Patients Living with Multiple Sclerosis to Self-Manage Their Health”

Effective patient self management will reduce the reliance on phone calls to the physicians’ office

This will result in cost savings in terms of physician/staff time and realization of opportunity costs for increased revenue in marginal patient volume.

My HealthLink will reduce patient

phone calls by 50%

Implementation of My HealthLink

Results - Quantitative

Measurement Tool Ten chronic disease self-management parameters and

the Stanford Patient Education Research Center’s Self-Efficacy for Managing Chronic Disease 6-Item Scale.

All MS patients were asked to fill out this survey every 3 months for a 12-month time period, whether or not they used the My HealthLink product.

Results The data did not show the predicted improvement in

self-management parameters• limited sample size • short time interval • lack of control group

Stanford Self Efficacy Question 6:

How confident are you that you can do things other than just taking medications to reduce how much your illness affects your everyday life?

The goal was 80% will rate this as “highly or extremely” satisfied

Results ranged from 35% to 78% over the 6 month period

Results - Qualitative

Measurement Tool MS Patient/Family Advisory Council provided

verbal and written feedback at 3, 6, 9, and 12 months after start of the project.

The Wrap Up Meeting at the End of the Project • How could the MS center help the patients

and families in managing their chronic condition and did this project help?

The Patients and Families Speak

Physical Access Need easier access for wheelchairs

Functional Support There is a need for help outside of the institution, in

the home, outside of the medical visit All function issues are local MS patients need to be able to “smell the roses

outside". This was a key point. There needs to be an advocate for function issues OT is a "bust". A forum on home design would be a great local topic. The fundamental question a practitioner should ask is:

"How hard is it to go to bed and get out of bed?" Instead of Habitat for Humanity, how about Habitat for

Mobility.

The Patients and Families Speak

Insurance Insurance won't reimburse for medical

equipment, relating to function, such as manual v. auto bed.

Medicare won't pay for most equipment, etc relating to MS, since it is considered not to be a "neuromuscular" disease.

MS, the disease, has many faces and there are a myriad of function issues, that can't be standardized or categorized into one area.

The Patients and Families Speak

Clinic Operations The staffing and clinic needs cannot be

standardized for a hospital clinic, thus normal staffing ratios, benchmarks don't work.

There needs to be a "mobility" assessment done at the visit. This would be called a functional needs assessment.

The clinic should be a support clearinghouse, but not a brochure clearinghouse. The patients need boots on the ground in their environment outside of the hospital to help and offer support.

A mobility assessment counselor would be helpful.

The Unexpected Success Efficacy of using a patient advisor in the clinic to enroll and

train patients on the MyHealthLink system.

It was clear, through feedback from the patient/family advisory group, that this program was beneficial.

Most importantly, the qualitative feedback from the MS Patient/Family Advisory Council reinforced the value of engaging patients and families in the design and review of clinical delivery systems (in this case, as it pertains to disease self-management).

The Essential Role of the Patient Advisor

Christine AbbottPatient Advocate Extraordinaire

Patient Advisor Requests for ePHR Enhancements

Mechanism to document routine health information (mammogram, dental visit, eye exam, etc)

Place to document cholesterol, exercise, diet Include National MS Society hyperlink Hook into MS Watch.org (shared solutions) Increase font size Medication center improvements

Platform for Next Research Grant/Project

3 year study focused on hypertension in primary care practices and the use of the ePHR

Randomized controlled trial of 720 patients and 20 physicians

7 month period of design enhancement with 30 local and 10 national patient advisors

Platform for Next Research Grant/Project

Measure impact of use of an patient enhanced ePHR on: Patient activation Perceptions of care Blood pressure BMI Lipid levels Patient-MD communication Adherence to treatment guidelines Utilization of medical services