Transcript 01.13.11_Consumer-Provider Shared Decision

Consumer/Provider
Shared Decision-Making in Health Care
Madeleine Schlefer
AIDS Institute Office of the Medical Director
Jenny Knight
Harlem Hospital
January 13, 2011
Funded by HRSA
HIV/AIDS Bureau
Goals
• Overview of patient self-management
• Review patient and provider skills to support
self-management
• Look at examples of how to enact some of these
skills
• Brief review of studies on patient selfmanagement
• Learn where to find useful resources and tools
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Question for Participants
• What is Self-Management?
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What is Patient Self-Management?
Self management improves self-efficacy and fosters
collaborative goal setting and decision making
between consumers and providers. This relationship
allows consumers to monitor and manage their
health. (Bodenheimer, Lorig et al, 2002; Lorig, 2003)
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Patient Self-Management: Background
• Most research about self management
focuses on arthritis, diabetes, and asthma
• A study from 1993 about arthritis self
management found that increased self
efficacy lead to better health outcomes
• Key element of the chronic care model
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Chronic Care Model
Decision Support
Prepared, Proactive
Practice Team
Informed, Activated Patient
Community Resources
Productive
Interactions
and Policies
Self-Management Support
Delivery System Design
Organization of Services
Improved
Functional
and Clinical
Outcomes
Clinical Information
Systems
Adapted from Wagner, 1998
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Patient Centered
Care
Consumer
Involvement
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Self
Management
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Why Learn About
Patient Self-Management?
The majority of illness management takes
place outside of formal healthcare with patients
engaged in day-to-day “illness work.” (Swendeman
et al., 2009)
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Knowledge of Medicine
Knowledge About Patient
“Once physicians recognize patients as experts on
their own lives, they can add their medical
expertise to what patients know about
themselves to create a plan that will help patients
achieve their goals” (Bodenheimer et al., 2002)
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Patients Who are Effective Self Managers
• Learn about their health and their condition
• Actively participate with their provider and
practice effective communication skills
• Understand and follow treatment plans
• Monitor symptoms
• Seek and follow expert medical care and advice
• Keep scheduled appointments
• Practice health promoting behaviors
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How Providers Can Support
Self Managed Care
• Provide education to address lifestyle changes,
emotional factors and medical management
• Seek alternatives to a one size fits all approach
• Shift role from “professional expert” (instructing
and deciding) to “guide” (supporting, advising, and
navigating).
• Support peer learning
• Joint Decision Making: Collaborate in goal setting
and action planning
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Self-Management Education
Adopted from HRSA Care Action: Self-Management and the Chronic Care Model. January 2006
Content
Traditional Education
Disease-specific information
and technical skills
Definition of the
problem
Inadequate contrail of
disease is the problem
Theoretical
construct
underlying the
education
Goal
Disease specific knowledge
produces behavior change
and leads to improved clinical
outcomes
Patient compliance with
prescribed behavior changes
will improve clinical outcomes
Educator
Health professional
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Self-Management Education
Problem-solving skills that can be
applied to chronic conditions in
general
Patient formulates the problem,
which may or may not be directly
related to disease
Patients self-efficacy (learned
through setting short-term action
plans) leads to improved clinical
outcomes
Increased self-efficacy will improve
clinical outcomes
Health professional or peer leader
and other patients in the group
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Self-Management Education Results
• “In the short-term, self-management
education may help HIV patients experience
fewer significant somatic symptoms and may
lead to improved self-efficacy for symptom
control. The pilot results also suggest a trend
towards higher levels of physical exercise, a
self-care health behavior highly emphasized
in the program.” (Gifford et al, 1998)
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Seek Alternatives to a
One-Size Fits All Approach
• “When asked ‘What is your main problem,’ a
chronically ill patient answered, “Caring for my
spouse with sever Alzheimer’s dementia” and
another responded, ‘My husband died 6 months
ago and I am terribly lonely.’ These examples
show that physicians defining the problem as
poor adherence to a medical regimen or an
unhealthy diet are missing the boat.”
(Bodenheimer et al., 2002)
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Collaborate in Goal Setting and Action Planning
ASSESS patient’s primary concern or problem
EXPLORE patient’s feelings about the problem
IDENTIFY patient’s goals
BRAINSTORM solution ideas
CHOOSE a solution and action steps to try
ESTIMATE self efficacy
From a presentation by Joseph Rukeyser, PhD
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Collaborate in Goal Setting and Action Planning
Ex: Case Scenario for Developing a Self-Managed Action Plan
Provider (Pr): We have discussed several things you might want to
do to help with your high blood pressure. What do you think
would be realistic for you to do in the next week or two?
Patient (Pt): Maybe I could exercise
Pr: That would be great. Exactly what types of exercise will you do
and how often will you do it?
Pt: I guess I will walk for 15 minutes.
Pr: Generally, we like to see people exercising 3 to 5 days a week,
How many days a week will you walk 15 minutes?
Pt: I can do this at least 4 days a week
Pr: Great! Can you tell me when in the day you will do this?
Pt: I can do it before I each lunch on my lunch hour
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Collaborate in Goal Setting and Action Planning
Case Scenario for Developing a Self-Management Action Plan
Pr: Sounds like you have a plan. How certain are you that you will
walk for 15 minutes 4 days a week during your lunch hour, on a
scale of 1 to 10?
Pt: Well, I think a 5 or a 6
Pr: What do you think the problem will be?
Pt: It is sometimes really hot a noon and I don’t like going outside.
Pr: Oh, I understand that- can you think of some alternatives?
Pt: Yeah, on hot days I can walk before dinner
Pr: Now how sure are you?
Pt: Oh, now I am an 8
Pr: Terrific- I will be really interested in how you are getting on
Example taken from Lorig (1999) Stanford University.
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Study Results: Self-Management Education
•Kennedy et al. The effectiveness and cost effectiveness of a national lay-led self
care support programme for patients with long term conditions: a pragmatic
randomised controlled trial 2009
Key Finding: Intervention group reported higher levels of self-efficacy, energy,
exercise, relaxation and greater partnership with clinicians compared to control
group. Also associated with small reduction in cost.
Study Design: Randomized, controlled trial. 629 patients participated in 6 weekly
2.5 hour group sessions. This group was compared to patients on a waiting list to
participate in the sessions.
Length of study: data collected at baseline, 6 months, and 12 month
•Lorig et al. Evidence suggesting that a chronic disease self-management program
can improve health status while reducing hospitalization: A randomized trial. 1999
Key Finding: Treatment group demonstrated improvement in: time spent exercising
each week, practice of symptom management, communication with physician, selfrated health, social activities limitation, energy/fatigue, and health distress.
Experienced fewer hospitalizations. No change in number of visits to physician,
pain, shortness of breath, or psychological well-being.
Study Design: Randomized, controlled trial. 952 patients over 40 participated in 7
weekly 2.5 hour group sessions.
Length of study: data collected at baseline and 6 months
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Study Results: Patient-Provider Relationship
•Beach et al. Is the quality of the patient-physician relationship associated with
better adherence and health outcomes for patient with HIV? 2005
Key Finding: Patients who reported that their provider knew them “ as a person”
were more likely to receive HARRT, be adherent to HAART, and have
undetectable viral loads
Study Design: Cross-sectional analysis of 4,694 interviews with 1,743 patients
within the John Hopkins HIV Cohort Study. Patients interviewed every 6 months in
an HIV clinic with an audio computer-assisted survey instrument. Asked to respond
“yes,” “no,” or “don’t know” to the statement “My HIV provider really knows me as a
person”. Receipt of HAAT, adherence to HAART, and viral load determined
through chart reviews.
•Schneider et al. Better physician-patient relationships are associated with higher
reported adherence to antiretroviral therapy on patient with HIV infection. 2004
Key Finding: 6 of the 7 variables associated with adherence: general
communication, overall satisfaction, willingness to recommend, physician trust,
HIV-specific communication, adherence dialogue.
Study Design: Cross-sectional analysis of 620 patients who completed study
questionnaire. Medication adherence and 7 patient-physician quality variables were
self-reported.
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Study Results: Patient Self-Management
Dennis et al. Chronic disease management in primary care: from
evidence to policy. 2008.
Key Finding: Interventions to support patient self-management or
change delivery system design were strongly associated with
improvement in patient and process outcomes. Outcome
measures sought were: objective measure of health
performance, adherence to disease specific guidelines, patient
satisfaction, providers satisfaction, and economic measures.
Study Design: Systematic review of 141 studies and 23 systematic
reviews published in English from January 1990- February
2006.
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Integrating Patient Self Management into
Clinical Practice
Jenny Knight, FNP, MPH
Harlem Hospital Center
New York, NY
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• Harlem Hospital Center was part of a one-year
national learning community sponsored by the
Institute for Healthcare Improvement on patient
self-management
• Focused our work within our Family-Centered
Care Program (FCP)
 Multidisciplinary team approach to care
 Worked with patient within the context of their family
 Seeks to promote patient self-management as part of
program goals
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Population of Focus
• 25% of FCP patients are
recent immigrants from West
Africa
• The remaining 75% of FCP
patients are predominantly
African-American or
Hispanic
• Many face legal, linguistic
and cultural barriers to care
• The self-management model
is well-suited to assist these
patients in overcoming
barriers and achieving better
health outcomes
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Introducing Self-Management
• Developed a goal setting tool to set a patientdriven healthcare goal and develop an action
plan during the clinic visit
• Developed a model to accomplish this within
the time constraints of the clinic setting
• More recent work has focused on developing
a patient-centered case management model
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My Action Plan for Better Health
Harlem Family Center
This month I will:
Describe it: (How, where, what, when, how often)
Improve my food
Choices
Reduce my stress
Barriers (what might get in the way):
Take my meds everyday
Attend a support group
Plans to over come barriers (what could you do to
handle the barriers?):
Exercise more often
Follow up with a medical
appointment
(go to the dentist)
Cut down or stop
smoking (or drinking or
drug use)
Other:
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On a scale of 1 – 10: How important is this goal:
________
(1 = Not important at all, 5 = somewhat important, 10
= the most important)
On a scale of 1 – 10: How sure am I that I can
make this goal: ______
(1 = Not sure at all, 5 = somewhat sure,
10 = 100% sure)
Follow up Plan:
Signature:
Clinician Signature:
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Team Approach
• Piloted in Mom-Baby Clinic
 Later expanded to several providers in ID Clinic
• Nurse assists patient in goal setting during
triage
• Provider reviewed goals with pt during visit
• Case manager available to reinforce goals
• Goal and action plan filed in Pt’s chart
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Goal-setting was Patient-Driven
• Easier than expected to generate goals from
patients
• Encouraged the patient to identify the goal
themselves, come with action plan, identify
barriers, come up with solution that worked
for them
• Skills included: asking opening ended
questions, reflective listening, summarizing
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Impact of Goal-Setting
• Can solve impasse around behavior change
• Gives providers deeper understanding of the
patient
• Improves relationship between pt-nurse and
pt-provider
• Empowers pt to make needed behavior
changes, or at least think about them if they
are not ready
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Case Studies
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Improving Adherence
• 37 yo female with AIDS, newborn at home, with recent illnesses,
weight loss, and depression. Stopped taking her meds.
• Goal: “To take my medicines every morning after eating”
• Barriers: “Tired of taking pills”
• Plans to overcome barrier: “Think about tomorrow!”, “Remind
myself why I am taking them”
• Follow –up: Reported 100% adherence on self-reported followup survey; a more positive outlook
• Objective measures: CD4 increased from 153 to 360 and VL
decreased from 15,400 copies to undetectable; weight
increased by 13 lbs
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Substance Abuse
• 28 yo with HIV, relatively medically well, but with depression,
active marijuana use, multiple missed clinic visits, and chaotic
life circumstances. Active ACS case: all three kids in mandated
foster care
• Goal: Stop marijuana use to get children back, “must have clean
urines”
• Barriers: friends, depression, lack of activities
• Plans to overcome barriers: attend parenting classes, attend
drug support group, take meds for depression
• Follow-up: additional barriers identified as drug supplying
boyfriend and drug-infested neighborhood
• Objective measures: persistently positive urines; but improved
compliance with follow-up visits; VL initially showed a significant
decrease (though not maintained); CD4 stable
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Coordination of Care
• 46 yo male with AIDS with hx of substance use and
poor adherence.
• Returned to NYC 8/06 after several months of
incarceration in Virginia with CD4 277 and VL <50
and reengaged in care
• By 11/06 CD4 180, VL > 100,000. Pt was at the
hospital daily attending support programs (HATS,
COBRA, HABARI, Harm Reduction, Nutrition, Hep
C)
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Setting a Goal
• Held case management meeting with all
programs, provider and patient
• At that meeting developed goal and action
plan with pt
• Goal: Take medications every day
• Plan: Take my pills every morning at home
after breakfast
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Problem-Solving
• Barriers: Forgetting/Frustration/Substance Abuse
• Plans to overcome barriers:
 Keep dose in bag/jacket
 Check in with HATS (adherence support daily)
 Continue 1:1 counseling with Habari (Housing, psych
referral)\
 Continue 1:1 counseling with Harm Reduction Program
• Follow up
 At next medical visit, pt reported 100% adherence
 1/07 CD4 233, VL 2,880
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Collaborative Goal-setting in case
management context
• Mandated to involve patient in
multidisciplinary case management meetings
to set collaborative goals
• In practice, patient is often intimidated by the
number of providers in the room
• Can feel disempowered and shut down
• Testing models to empower patient to be the
lead voice: express goals and first steps of
action plan
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Additional Resources
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Look out for this new AIDS Institute Publication
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Resources/Tools
Resources
Making Sure Your HIV Care is the Best It Can Be Training
http://www.nationalqualitycenter.org/index.cfm/5943/13886
Making Sure HIV Patient Self-Management Works
http://www.nationalqualitycenter.org/index.cfm/5943/16134
Shared decision making toolkits
http://www.dhmc.org/webpage.cfm?site_id=2&org_id=844&gsec
_id=0&sec_id=0&item_id=43192
Workbook on Developing and Evaluating Patient Decision Aids
http://decisionaid.ohri.ca/docs/develop/Develop_DA.pdf
Tools
Ottawa Personal Decision Guide- 1 page, 2 page
http://decisionaid.ohri.ca/docs/das/OPDG.pdf
http://decisionaid.ohri.ca/docs/das/OPDG_2pg.pdf
Choosing Health for Life: A Patient Medical
Journal
http://www.nationalqualitycenter.org/index.cfm/565
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My Shared Care Plan- A Health Management Tool
http://www.ihi.org/IHI/Topics/HIVAIDS/HIVDiseas
eGeneral/Tools/My+Shared+Care+Plan.htm
Tips and resources to help patients become more involved in their Wallet Sized Appointment Card
health care by asking the right questions
http://www.ihi.org/NR/rdonlyres/B35A1840-5434http://www.ahrq.gov/questionsaretheanswer/
44E8-A0AB7AB91F3DC22D/358/Tool_WalletSizedApptCard.p
df
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Selected References and Further Reading
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Battersby M, Von Korff M, Schafer J, Davis C, Ludman E, Greene S M,
Parkerton M, Wagner E H. Twelve Evidence-Based Principles for
Implementing Self-Management Support in Primary Care. The Joint
Commission Journal on Quality and Patient Safety. 2010; 36(12): 561-570
Beach M, Keruly J, Moore R. Is the quality of the patient-provider relationship
associated with better adherence and health outcomes for patients with HIV?
Journal of General Internal Medicine. 2006; 21: 661-665
Bodenheimer T, Lorig K, Holman H, Grumback K, Patient self-management of
chronic disease in primary care. JAMA. 2003; 188(19): 2469-2474
Coleman and Newton, Supporting Self-management in Patients with Chronic
Illness. American Family Physician. 2005; 72(8):1503-1510
Epstein RM, Mauksch L, Carroll J, Jaén CR. Have You Really Addressed
Your Patient's Concerns? Family Practice Management. 2008; 15(3):35–40
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National Quality Center (NQC)
Selected References and Further Reading
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Gerteis M, Edgman-Leitan S, Daley J, Delbanco TL. Through the Patient’s
eyes; understanding and promoting patient-centered care. San Francisco:
Jossey-Bass; 1993
Gifford AL, Groessl EJ. Chronic disease self-management and adherence
to HIV medications. Journal of Acquired Immune Deficiency Syndromes.
2002; 31(3): s163-s166
Gifford A, Laurent D, Gonzalez V, Chasney M, Lorig K. Pilot randomized
trial of education to improve self-management skills of men with
symptomatic HIV/AIDS. Clinical Science. 1998; 18(2):136-144
Schneider J, Kapla S, Greenfield S, Li W, Wilson I. Better physician-patient
relationship are associated with higher reported adherence to antiretroviral
therapy in patients with HIV infection. Journal of General Internal
Medicine. 2004; 19: 1096-1103
Schoenbaum S.C. Can care be patient-centered and clinically efficient?
Bulletin of the Royal College of Pathologists, July 2007
Swendemen D, Ingram B, Rotherman-Borus MJ. Common elements in
self-management of HIV and other chronic illnesses: an integrative
framework. AIDS Care. 2009; 21(10):1321-1334
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