Complex Patient Journeys

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Complex Patient Journeys Note: Best viewed in slide show mode

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Page 1: Complex Patient Journeys

Complex Patient Journeys

Note: Best viewed in slide show mode

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About the speaker

Matthew P. Hall, CEOHuman Care Systems, Inc.

Direct: 617.649.2118Mobile: 617.501.1818

[email protected]

Matt founded Human Care Systems (HCS) in 2008 in order to impact one of the largest levers in healthcare: patient self-management.

HCS was spun-out from the Kerdan Group, a biopharma and medtech consulting firm. Matt co-founded Kerdan in 2001.

Prior to Kerdan, Matt ran several healthcare related businesses, worked in venture capital and was a consultant at Bain & Company.

Matt has lived and worked in the US, Europe, Japan, South Africa, and South Korea. Matt has a BA with honors from Williams College.

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Narrow, transactional interactions don’t build durable value

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Deep, engaging relationships grow in value

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Complex patient journeys and value

Understanding the complex patient journey

What tools do we have to impact the complex patient journey?

Case study: Helping appropriate patients initiate insulin

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The Total Value Equation

Levers to impact Value Equation:

Real World Outcomes

Change diagnostic or therapy

Change clinical practice

Change patient self-management

Change reimbursement

Costs (financial, hassle, safety)Total Value =

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Self-management drives outcomes

Source: New England Health Care Institute, Client Conference, May 20, 2008

Health Determinant

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How do complex patient journeys affect your brand?

Complexity and burden for the patient disrupt and overwhelm appropriate therapy initiation, adherence, effective relationships with HCPs, caregiver involvement, productive management of emotions and other critical health behaviors.

Success with complex patient journeys means better care: more opportunity to intervene, greater patient adherence to therapy, better outcomes and health economics, closer relationships with physicians and better ROI from each promotional investment.

These are unique journeys with common elements. They are not averages.

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How does patient self-management impact your brand?

• Loses efficacy• Loses therapeutic potency• Loses value• Loses market share

Poor patient self-management:

• Missed initiation opportunity• Delayed initiation opportunity• Unhealthy lifestyle habits• Interrupted course of therapy• Confounded biochemical events• Decreased overall adherence• Premature therapy termination• Increased hospital admissions• Lack of return to therapy

...due to...

Your brand:

What causes poor patient self-management?

Can it be changed?

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Relevance of complex patient journeys for your brand

When patients experience physical, cognitive, emotional, behavioral, and environmental stressors...

...they are more likely to be self-destructive, withdraw, overeat, avoid, self-medicate, become

more dependent, relapse, regress, have comorbidities, and become

non-adherent.

Treatment effectiveness is reduced.So is brand value.

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✔ Complex patient journeys and value

Understanding the complex patient journey

What tools do we have to impact the complex patient journey?

Case study: Helping appropriate patients initiate insulin

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What is a complex patient journey?

Complex patient journeys occur when patients have any combination of high disease burden, multiple concomitant health problems, or complex therapy. 

Complex patient journeys have multiple dimensions and inflection points: places where things can change dramatically toward the positive or negative.   

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What makes up a complex patient journey?

A patient journey has multiple dimensions: key aspects of patient experience and development.

A patient journey has critical inflection points: key moments in patient experience where variables

intersect to predict outcomes.

What are the key

dimensions and

inflection points for your target

patients and product ?

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3 Dimensions of the Complex Patient Journey

Guiding Questions Why it Matters

Healthcare journey Which people & organizations does the patient interact with on his or her journey?

Determine what communication channels can be used to reach patients at their inflection points.

Disease & Therapy journey

How and why do the the specific diagnostic & monitoring tests, and classes & brands of treatment change through the journey?

Identify opportunities to drive optimal use of your therapy.

Human journey What are the physical, cognitive, emotional, behavioral, and social experiences the patient goes through?

Understand the medical and self-management needs that impact the course of the patient journey.

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Patient Healthcare Journey: Crohn’s Disease

• Patient begins experiencing symptoms: abdominal pain and diarrhea are most common.

• Patient may rationalize symptoms and/or attempt diet changes before talking to their doctor.

• Patients present to PCP or GI, but almost all diagnosis done by GI.

• On average patients spend nearly 6 months between initial presentation and diagnosis of CD.

• 80% of patients initiated in Flare.

• Most receive combination of 5ASA and steroids.

• As patients re-enter flare physicians move to later lines of treatment, particularly biologics .

• Compliance wanes during remission.

CopingInitial TreatmentHelp SeekingTroubling Symptoms

Flare-Remission Cycle

Patients are miserable and experimentation with treatment changes is high.

Many patients stay on unsafe long term treatments or discontinue during remission – either path worsens outcomes.

Flare

Remission

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“I need a transplant” “They found me a kidney”

Surgery and Recovery

“I’m going home”“I still have to

actively manage my health”

• Difficulties of dialysis and health management

• Fear of death, surgery, failure

• Building a community at dialysis center

• Preparing for transplant

• Anxiety about finding a kidney either from family or waiting by the phone

• Often dealing with other health issues (e.g. diabetes, heart disease, etc.)

• Mix of excitement and anxiety

• Living donor:Schedule surgeryPrepare for surgeryGuilt, fear,

gratitude around donor

• Cadaveric kidney:Rush to get to the

hospitalLet friends and

family knowReschedule other

things going on

• Fear of surgery and complications

• Fear for living donor’s surgery

• Preparing for life after going home – learning about – wound care, diet, going home, warning signs of rejection

• Mixed emotions:Relief of being

homeFear/anxiety about

possible rejectionSocial isolation of

recoveryFinancial stress

• Difficulties of recovery

• Challenge of starting a new routine

• Continuing the routine

• Frustration/boredom around the routines

• Disappointment that kidney health is still a big part of life

• Feeling that some parts of treatment are not important

• Financial burden of medications, especially if insurance coverage ends

• Managing co-morbidities

• Continued fear of rejection or need for a second transplant

Patient Disease & Therapy Journey: Kidney Transplant

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Patient Human Journey: Hepatitis C

User scenario: Patricia is a 68 year-old unmarried mother of two adult children. She works as a bookkeeper in a medium-sized company. She needs to keep her job, in part to support a disabled adult son.

Following several months of fatigue and joint pain, Patricia is diagnosed with Hepatitis C. She is shocked and confused and can’t imagine how she got it. Patricia fears what people will think and worries about taking care of her son and staying sane if she starts treatment and feels sick all the time.

Dimensions of Change Beginning Solution Result

Cognitive

This must be a mistake, Patricia thinks. I never used drugs! (confusion, denial, misconception)

• Myth busting• Cognitive orientation exercise• Early phase education•Internalization exercise

Patricia learns that there are all kinds of ways to get Hepatitis C and accepts that she has it. (balance, integration)

Emotional

It seems to Patricia that her world has stopped. Sometimes she feels numb, and sometimes she trembles with rage. (shock, anger, fear)

• Shock CBT exercise• Anger CBT exercise• Fear CBT exercise• Emotion educations

Patricia moves through two stages of grief. She learns that, with proper planning and care, she can manage treatment and deal with side effects as they come. (hope, openness)

Behavioral

Patricia avoids starting treatment. She Googles her symptoms and changes doctors.

• Avoidance CBT exercise• Goal re-orientation activities• Barriers to adherence exercise• Adherence problem solving

Patricia schedules her first treatment, talks to her HR department and plans for extra support for her son when the side effects are bad.

Social

Patricia wonders if she will be able to continue working and helping take care of her son. She tests her relationships and is feels angry. (questioning self-concept, strained relationships)

• Values clarification exercise• Relationship CBT exercise• Social media activities• Social learning/modeling videos

Patricia joins an online HCV support group, redefines her social identity, and finds some new hobbies for days when she feels sick. (new community, self-discovery)

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What makes up a complex patient journey?

A patient journey has multiple dimensions: key aspects of patient experience and development.

A patient journey has critical inflection points: key moments in patient experience where variables

intersect to predict outcomes.

What are the key

dimensions and

inflection points for your target

patients and product ?

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Inflection points are high-impact places to intervene

A patient journey has critical inflection points...key moments in patient experience where variables intersect to predict outcomes.

Patient decisions and actions at this time have a significant impact on long term outcomes.

Long-time diabetic has been warned, “If you can’t control your blood sugar, we’ll have to put you on the needle.”

Now is the time.

10 year-old hemophilia patient wants more independence with his condition. His mom is nervous, but

now is the time.

Dialysis patient finds out that a compatible kidney has

been found. A new self-care routine is starting.

Today my doctor told me I have Crohn’s. I feel like

my whole life stopped. I’m in a daze. What do I do?

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What are inflection points in a complex patient journey?

• An intervention is needed, impactful, or critical e.g., initiation of injectable insulin

• Not intervening could be dangerous e.g., vaccination • When benefits of intervention outweigh risks e.g., immunosuppressant after transplant • When which interventions are best e.g., aspirin or ACE inhibitor or beta blocker for CHD

Which patient inflection points are most important for your therapy?

✔ Small or large windows of opportunity where science helps us decide...

Moments when patient risk factors and protective factors coalesce to be exponentially powerful predictors of outcome e.g., 2nd trimester for fetal brain development, adolescence in general

Life events that are physical, cognitive, emotional, behavioral, or social e.g., initial diagnosis of a condition, relapse, change in disease status

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Value of understanding the Complex Patient Journey

• Focus on patient behaviors with known drivers.

• Uncover drivers of under diagnosis, missed diagnosis, and poor adherence.

• Triangulate from multiple perspectives to get at the real patient experience instead of just the perspective of a small number of physician specialties.

• Connect unmet needs to specific potential points of treatment initiation and other behavioral interventions.

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Assessing complex patient journeys for your brand

Six-weekdiagnostic:

Define “patient journey” for your brand.• Healthcare journey• Disease & Therapy journey• Human journey

Define major inflection points in patient journey with your brand.

Define the dimensions for each inflection point in patient journey.

Choose best known interventions to match critical dimensions and inflection points in patient journey with brand.

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Complex patient journeys and value

Understanding the complex patient journey

What tools do we have to impact the complex patient journey?

Case study: Helping appropriate patients initiate insulin

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Identify major patient pathways and inflection points in patient experience using focus groups, expert interviews.

Six-week diagnostic.

Identify major target behaviors for patients using focus groups, expert interviews.

Identify cognitive, emotional, behavioral, social barriers to adherence.

Collapse core psychological themes in non-compliance among target patients, using quantitative and qualitative research methodology, framed in terms of patient need.

Match patient needs to behavioral program to delivery method (i.e., video, education, story, cognitive reframing, behavior planning, tool use).

Multi-channel (web, mobile, live, printed) integrated engagement

Patient management platform to connect data to effective patient self-management based on behavioral science.

Test with user and clinician usage and feedback as well as outcomes and health economics.

Impacting the complex patient journey

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So, what is behavior science?

• Behavior modification therapy, pedagogy, and cognitive-behavior therapy are groups of empirically proven health management techniques, changing patient experience in predictable, quantifiable, formulaic ways.

• Many combinations of cognitive, emotional, and behavioral variables, constants, and weighting results in hundreds of reliable, valid protocols that currently exist.

• Protocols are effective for patients with serious, chronic disease resulting in decreased cognitive, emotional, behavioral, and social barriers to adherence, improved adherence, and improved illness-related outcomes.

• Efficacy of behavior science depends on the right personalization of proven protocols at the proper inflection points.

• The efficacy of computerized and internet behavior science is established. Global health authorities have endorsed these methods for patient self-management.

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Proven and effective behavioral science

Classical Conditioning deals with events that

come before a behavior (often called triggers or

antecedents).

Operant Conditioning deals with events that come after a behavior

(positive or negative consequences).

Social Conditioning deals with how we learn

collaboratively and interdependently, with

and from others (modeling and

working-through).

Cognitive Behavioral Therapy deals with idiosyncratic relationships between thoughts, feelings, and actions.

Critical Pedagogy deals with processes of education and internalized knowing. People learn best when new information is timed (happens at key inflections), integrative

(easily processed), and directly relevant to nuanced personal experiences.

Behavior Modification

Therapy Cognitive Behavioral Therapy

Effective Pedagog

y

Thoughts

FeelingsActions

Classical

OperantSocial

Integrative

PersonalTimed

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Specifically, what is cognitive-behavioral therapy (CBT)?

• The basis of CBT is that thoughts and feelings impact actions. 

• CBT exercises are used to help reframe a person’s thoughts and feelings, and this shift directly impacts behavior.

• CBT methods are the most-studied, scientifically supported treatment in psychology and have been proven effective in a wide range of chronic diseases, surgeries, and procedures.

• CBT has been studied and shown to be effective when delivered via a wide range of channels, including: computer interface, paper materials, games, nurses, diabetes educators and physicians.

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Where can we intervene?

Physical events are one part of a complex cascade of patient experience.

A patient perceives and interprets sensory and other physical information.1. Physical .........

2. Cognitive .........

3. Emotional .........

4. Behavioral .........

5. Social .........

Examples:

Changing thought patterns alters brain chemistry and neuroanatomy.

Cognitive activity, including meaning-making, predicts how one feels, acts,

interacts: thoughts impact health.

Feelings are multisystem biochemical and energy pathways.

Emotions predict and derive from experience.

Action are reflexive or deliberate. Either way, they are predictable from

physiology, thoughts, feelings, and social contexts.

Physicality, thoughts, feelings, and actions affect relationships.

Quality of support relationships predicts well-being.

...and internal or external stressors can exacerbate physical

symptoms.“I was just diagnosed with Crohn’s. What’s happening to

my body?”

“Is it my fault that I have this disease? I’m not sure which of my problems are symptoms and if they can be helped.”

“I’m confused, angry and embarrassed. Being tired all the time makes me feel worse. It’s not fair!”

“Everything I eat hurts so I skip meals and snack on junk. I don’t talk to my doctor about it – what’s the use?”

“I leave business meetings and family functions suddenly and my boss and children get fed up with me.”

Best viewed in slide show mode

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Behavioral intervention vs. generic education

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Computerized behavioral intervention: Nutrition habits

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Computerized behavioral intervention: Depression

Source: Wright JH, Wright AS, Albano AM, Basco MR, Goldsmith LJ, Raffield T, Otto MW. Computer-assisted cognitive therapy for depression: maintaining efficacy while reducing therapist time. American Journal of Psychiatry. 2005; 162:1158–1164.

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Computerized behavioral intervention: Adherence

In a trial of medicine adherence (refills) among 50 diabetic patients (42 completed), behavior science significantly improved adherence.

Trial conducted March 1, 2009 to August 31, 2010 in United States

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Complex patient journeys and value

Understanding the complex patient journey

What tools do we have to impact the complex patient journey?

Case study: Helping appropriate patients initiate insulin

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“I have diabetes” “I need injectable insulin”“I still have to actively

manage my health”

• Mix of emotions: shock, fear, disappointment, anxiety, guilt, blame, confusion

• Slow orientation to condition

• Prognosis and contingencies: “If you cannot control your blood sugar, then you’ll have to go on the needle”

• Perception of self and condition intensifies

• Managing co-morbidities

• Spectre of needle looms large

• Avoidance of needle intensifies anxiety about needle

• Escalated emotions: fear, anxiety, guilt, shame, anger, helplessness, hopelessness

• Family members not engaging effectively, despite best intentions

• Misunderstandings and myths

• Starting and continuing new health routines

• Redefinition of self and condition

• Feeling that some parts of treatment are not important

• Managing co-morbidities

Insulin initiation: Patient journey inflection point

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Mary’s story: Tailored support with T2D

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User scenario: Mary is 58 years old with Type II diabetes, and is married with three grown children. She is an administrative assistant in a medium-sized company and looks forward to retiring some day.

Mary’s doctor has told her to get her blood sugar under control, lose weight, stop smoking, and avoid stress. Mary has avoided injectable insulin for years because of needle anxiety, and she also feels overwhelmed by all the big changes she is being asked to make.

Dimensions of Change Beginning Solution Result

Cognitive

There’s no way I’ll be able to inject myself for the rest of my life, Mary thinks. I hate needles! (confusion, low self-efficacy, misconception)

• Myth busting• Cognitive frame analysis• Self-efficacy exercise• Systematic desensitization• Mind-body exercise

Mary learns that insulin injections can be simple and routine. With a guided self-care program, she prepares and injects insulin for the first time (balance, integration)

Emotional

Mary is embarrassed. She’s disappointed in herself, but blames her doctor too. How can she change after all these years? (shame, anger, fear)

• Anger CBT exercise• Fear CBT exercise• Hopelessness CBT exercise• Emotion education • Reactivity analysis

Mary discovers that her anger comes from fear of losing control and not meeting others’ expectations. (hope, openness, self-efficacy)

Behavioral

Mary avoids starting insulin. She still smokes and overeats, telling herself, I just need to live in the moment and get through each stressful day. (cycle of triggers and consequences)

• Avoidance CBT exercise• Goal re-orientation activities• Functional analysis of stress• Behavior modification module • “Six steps to injection” module

Mary initiates insulin. She replaces her mid-day work snack with nicorette gum and starts going on a 15 minute walk over lunch. (reconditioning through contingency planning)

Social

Mary fears being ridiculed at work and stops lunching with others. At home, she refuses to talk about her health and focuses on the problems of others too much. (isolation, strained relationships)

• Values clarification exercise• Relationship CBT exercises• Social media activities• Social learning/modeling videos• Copatient skills training

Mary joins an online diabetes community and discovers several blogs. She learns new communication skills. She walks daily with a coworker. (new community, self-discovery, authenticity)

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Mary can engage through multiple, integrated channels

Take Acti

on

Engage

Gain Insight Learn

Mary, continuing to engage through multiple channels,

builds sustained change into her life via Behavior

Modification Therapy

Mary decides to try the website where she

experiences effective education, based on Pedagogical Science.

Her husband gets involved as well.

Mary gains insights into thoughts and feelings that

might be getting in her way, using the tools of Cognitive

Behavioral Therapy.

Mary uses the web and speaks with a nurse on the phone.

Mary might initially learn of the program through a clinician,

disease advocacy group, pharmacy, DTC or other

channels

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Six-step program for insulin initiation

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Mary picks a virtual guide

Social conditioning involves interactions with others, including modeling, coaching, social learning, contracting, and interpersonal support.

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Mary goes through guided step-by-step program to successfully initiate insulin and prepare to succeed with managing diabetes

Remind Mary of her motivation

Guided step-by-step process

Mary’s guide

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Six-step program for insulin initiation

Engaging myths and misunder-standings.

Use of cognitive dissonance (“is that

a myth?”) drives authentic insight

and prepares user to internalize new information.

More chunked, timed, titrated,

tailored information according to the well-researched

science of teaching and learning.

Interactive and fun.

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Effective education is:

• Learner-centered, driven by user choice and profile

• Hierarchically organized information delivered in bite- size chunks

• Challenging, calibrated to an 85% correct response rate

• Regulated by cognitive dissonance as a window for insight

• Configured to provide immediate review loops and positive reinforcement

Mary experiences effective education

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Six-step program for insulin initiation

Fear, anxiety, guilt, shame, anger are five emotions that

can be internal barriers to initiating insulin injections.

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Mary engages with her thoughts and feelings

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Mary adjusts her feelings using clinical techniques

Patients require multi-dimensional assistance for internal and external environments including prohibitive thoughts and feelings like shame, anger, fear, guilt, anxiety.

Smart software predicts and times Mary’s questions.

Guides are selected based on decades of robust socio-cultural research including micro-expression analysis.

The system knows Mary struggles with shame.

Just like in a therapist’s office, Mary quantifies her feelings.

These are included in her treatment algorithm.

Mary’s profile tells the software that her fear immobilizes her, keeping her from compliance and healthy habits.

According to her profile, Mary will become activated by converting fear to anger.

Adherence to therapies involves mind / body learning.

Information combined with the right emotional engagement leads to insight.

You may have strong feelings when you think about insulin.

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Mary engages in a private, judgment-free place

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Six-step program for insulin initiation

Four popular techniques to control autonomic nervous system response: deep breathing and counting, meditative

walking, sensory grounding,

progressive muscle relaxation.

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Mary develops skills to manage her emotions and reactions for real, internal, ongoing change

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Six-step program for insulin initiation

Guided visualization to explore

unforeseen reactions, rehearse

details, hilite perceptions of

difficulty, recondition

sympathetic ANS response.

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Mary learns and practices real clinical techniques

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Six-step program for insulin initiation

Hierarchical exposure activity for anxiety-producing steps if needed.

Worksheets to plan the cognitive,

emotional, behavioral, social details of injecting for the first time.

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Mary uses behavioral techniques to inject for the first time

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Q&A

Questions?