funded by hrsa hiv/aids bureau consumer/provider shared decision-making in health care madeleine...

Funded by HRSAHIV/AIDS Bureau

Consumer/Provider Shared Decision-Making in Health Care

Madeleine Schlefer

AIDS Institute Office of the Medical Director

Jenny Knight

Harlem Hospital

January 13, 2011

2 National Quality Center (NQC)

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 self-

management• Learn where to find useful resources and tools


Question for Participants

• What is Self-Management?


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)


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


Chronic Care Model

Improved Functional and Clinical Outcomes

Prepared, Proactive Practice Team

Clinical Information Systems

Organization of Services

Delivery System Design

Informed, Activated

Patient

Self-Management Support

Community Resources

and Policies

Productive Interactions

Adapted from Wagner, 1998

Decision Support


Patient Centered Care

Consumer Involvement

Self Management


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)


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)


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


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


Self-Management EducationAdopted from HRSA Care Action: Self-Management and the Chronic Care Model. January 2006

Traditional Education Self-Management EducationContent Disease-specific information

and technical skillsProblem-solving skills that can be

applied to chronic conditions in general

Definition of the problem

Inadequate contrail of disease is the problem

Patient formulates the problem, which may or may not be directly

related to diseaseTheoretical construct

underlying the education

Disease specific knowledge produces behavior change

and leads to improved clinical outcomes

Patients self-efficacy (learned through setting short-term action plans) leads to improved clinical

outcomesGoal Patient compliance with

prescribed behavior changes will improve clinical outcomes

Increased self-efficacy will improve clinical outcomes

Educator Health professional Health professional or peer leader and other patients in the group


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)


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)


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



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 exercisePr: 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 weekPr: 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



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 6Pr: 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 dinnerPr: Now how sure are you?Pt: Oh, now I am an 8Pr: Terrific- I will be really interested in how you are getting on

Example taken from Lorig (1999) Stanford University.


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 2009Key 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. 1999Key Finding: Treatment group demonstrated improvement in: time spent exercising each week, practice of symptom management, communication with physician, self-rated 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


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? 2005Key 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 loadsStudy 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. 2004Key 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.


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.


Integrating Patient Self Management into Clinical Practice

Jenny Knight, FNP, MPH

Harlem Hospital Center

New York, NY


• 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


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


Introducing Self-Management

• Developed a goal setting tool to set a patient-driven 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


My Action Plan for Better HealthHarlem Family Center

This month I will:

Improve my foodChoices

Reduce my stress

Take my meds everyday

Attend a support group

Exercise more often

Follow up with a medical appointment(go to the dentist)

Cut down or stop smoking (or drinking or drug use)

Other:

Describe it: (How, where, what, when, how often)

Barriers (what might get in the way):

Plans to over come barriers (what could you do to handle the barriers?):

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:


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


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


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


Case Studies


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 follow-

up 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


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


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)


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


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


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


Additional Resources


Look out for this new AIDS Institute Publication


Resources/Tools

Resources Tools

Making Sure Your HIV Care is the Best It Can Be Traininghttp://www.nationalqualitycenter.org/index.cfm/5943/13886

Making Sure HIV Patient Self-Management Workshttp://www.nationalqualitycenter.org/index.cfm/5943/16134

Shared decision making toolkitshttp://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 Aidshttp://decisionaid.ohri.ca/docs/develop/Develop_DA.pdf

Tips and resources to help patients become more involved in their health care by asking the right questionshttp://www.ahrq.gov/questionsaretheanswer/

Ottawa Personal Decision Guide- 1 page, 2 pagehttp://decisionaid.ohri.ca/docs/das/OPDG.pdfhttp://decisionaid.ohri.ca/docs/das/OPDG_2pg.pdf

Choosing Health for Life: A Patient Medical Journalhttp://www.nationalqualitycenter.org/index.cfm/5659

My Shared Care Plan- A Health Management Toolhttp://www.ihi.org/IHI/Topics/HIVAIDS/HIVDiseaseGeneral/Tools/My+Shared+Care+Plan.htm

Wallet Sized Appointment Cardhttp://www.ihi.org/NR/rdonlyres/B35A1840-5434-44E8-A0AB-7AB91F3DC22D/358/Tool_WalletSizedApptCard.pdf


Selected References and Further Reading

• 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


Selected References and Further Reading

• 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

funded by hrsa hiv/aids bureau consumer/provider shared decision-making in health care madeleine...

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selfmanagement look

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majority of illness