Component 25:

Patient-Centered Care

Component Guide

Health IT Workforce CurriculumVersion 4.0/Spring 2016

This material (Comp 25) was developed by Bellevue College, Columbia University, Johns Hopkins

University, Normandale Community College, Oregon Health and Sciences University, University of

Alabama-Birmingham, and University of Texas-Houston, funded by the Department of Health and Human

Services, Office of the National Coordinator for Health Information Technology under Award Number WF-

15-300.

This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0

International License. To view a copy of this license, visit

http://creativecommons.org/licenses/by-nc-sa/4.0/

Component Number: 25

Component Title: Patient-Centered Care

Component Description:The Institute of Medicine (IOM) defines patient-centered care (PCC) as: “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions.” As the definition implies, an important attribute of PCC is the active engagement of patients when health care decisions must be made. We recognize that this focus is narrower than the broader concept of “person-centered.” Our focus is on persons already involved in the health care system. That focus has its own characteristics and complexity.

Topics important to the implementation of PCC include effective and efficient communication, shared decision making, and support for patient needs. There is widespread consensus that the traditional methods used to pay health care providers tend to hinder their ability to deliver PCC by favoring volume over value. New and evolving delivery and payment models are expected to stimulate and sustain innovative approaches to the delivery of PCC in the future. Importantly, there is evidence that information technology can have multiple benefits for PCC by improving shared decision making, patient-clinician communication, patient engagement, and patient access to medical information. Examples of IT solutions to implementing PCC are provided in this component.

Units in the PCC component that are specific to topics covered in other components appear here, but can also be found throughout Components 21-24. They are marked with an asterisk (*) and the name of the component to designate their location. The units that are not marked as appearing in other components are relevant to all topics covered in other components.

Component Objectives:At the completion of this component, the student will be able to:

1. Describe an overview of the current state of patient engagement and policy goals for the future.

2. Critique designs of interventions focused on individual behavior change and explain the importance of promoting or evaluating behavior change.

3. Define and discuss DIY medicine, the Quantified Self, and mHealth, including the types of tools available and the challenges of incorporating these approaches in clinical care.

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4. Describe the use of technology to support and enable patient-driven coordinated care.

5. Examine the principles of communication, as well as the informatics underpinnings, challenges, and social issues involved when putting communication at the center of patient-centered care.

6. Discuss the importance of communicating risk information with patients and develop strategies for communicating risk to patients using the guidelines and methods.

7. Define shared decision-making and describe the barriers, implementation strategies, and interactive tools that are designed to support shared decision-making in health care delivery.

8. Describe what precision medicine is, how it is being used in patient-centered care, and the challenges of implementing precision medicine.

9. Discuss considerations for presenting data from tools that are designed to engage patients and examine data and the presentation of data related to the patient experience, especially patient satisfaction and patient-reported outcomes.

10.Examine data and the presentation of data related to the patient experience, especially patient satisfaction and patient-reported outcomes.

Component Files

Each unit within the component includes the following files:

Lectures (voiceover PowerPoint in .mp4 format); PowerPoint slides (Microsoft PowerPoint format), lecture transcripts (Microsoft Word format); and audio files (.mp3 format) for each lecture.

Application activities (discussion questions, assignments, or projects) with answer keys.

Self-assessment questions with answer keys based on identified learning objectives.

Some units may also include additional materials as noted in this document.

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Component Units with Objectives and Topics

Unit 1: Introduction to Patient Engagement & Participation

Description:

Over the last three decades, health care has begun changing in response to broad cultural changes facilitated by information availability and communication tools. At the level of care, patients are better informed about health and illness and are less dependent on their clinicians for information. They are more aware of choices, and more likely to want autonomy to arrange care that accommodates their values and preferences. This desire for autonomy is having and will continue to have profound effects on the patient-clinician relationship and on the systems and institutions involved in health care. At a systemic level, patients increasingly want to be involved in decisions and planning for research and health care delivery systems. This unit will provide a framework for understanding the transition from the passive patient-passenger to the active patient-driver of personal care and care systems.

Objectives:

1. Describe the spectrum of patient engagement and participation.2. Explore some common manifestations of patient engagement and participation.3. Review the role of technology in facilitating patient engagement and participation.4. Describe some of the barriers to patient engagement and participation.5. Describe some of the documented and proposed benefits of patient engagement

and participation.6. Describe some of the commonly raised concerns related to patient engagement and

participation.

Lectures:

a. Overview of Patient Engagement (18:34)1. Introduction with goals of the unit and definitions2. Manifestations/forms of patient engagement/participation3. Technology and tools to support patient engagement, participation4. Barriers, including time, systemic, language, attitude, culture, mandated metrics5. Benefits, including improved outcomes, safety, patient experience, cost6. Concerns, including cost, inefficiency, harm to patients

Suggested Readings

Barry, M., Edgman-Levitan, S. (2012). Shared Decision Making — The Pinnacle of Patient-Centered Care. The New England Journal of Medicine, 366 (9), 780-781.

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Bell, S., Mejilla, R., et al., (2016). When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship. BMJ Quality & Safety. doi:10.1136/bmjqs-2015-004697

Carman, K., Dardess, P., et al., (2013). Patient and Family Engagement: A Framework for Understanding The Elements and Developing Interventions and Policies. Health Affairs, 32 (2), 223-231.

Greene, J., Hibbard, J. et al., (2015). When Patient Activation Levels Change, Health Outcomes and Costs Change, Too. Health Affairs, 34 (3), 431-437.

Wolff, J., Berger, A., et al., (2016). Patients, care partners, and shared access to the patient portal: online practices at an integrated health system. Journal of the American Medical Informatics Association. Published Online First: 18 May 2016. doi: 10.1093/jamia/ocw025

Unit 2: Behavior Change Strategies

Description:

There are many definitions of “health care engagement.” This unit uses the American Hospital Association’s definition for health care engagement: “a set of behaviors by health professionals, a set of organizational policies and procedures and a set of individual and collective mindsets and cultural philosophies that foster both the inclusion of patients and family members as active members of the health care team and encourage collaborative partnerships with patients and families, providers and communities.” This unit will focus on the strategies and frameworks used to formulate, build, evaluate, and link health programs to patient outcomes with a focus on patient engagement.

Objectives:

1. Describe an overview of the current state of patient engagement and policy goals for the future.

2. Discuss best practices for behavior change interventions.3. Compare behavior change models.4. Design individual behavior change interventions.5. Promote and evaluate behavior change.

Lectures:

a. Behavior Change and Patient Engagement (9:09)

b. Comparison of Behavior Change Strategies (19:39)

c. Individual-oriented Behavior Change Interventions (16:37)

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d. Population-oriented Behavior Change Interventions (11:27)

Unit 3: Activated Patients

Description:

In recent years, there have been shifts in the relationship between patients and physicians. Patients have become more active and involved in their own health and the patient-physician relationship has shifted from a paternalistic one to a more collaborative model that encourages patient activation and responsibility. This unit discusses the concepts of DIY Medicine, the Quantified Self, and mHealth as examples of how activated patients are beginning to manage their own health.

Objectives:

1. Bring a global perspective on Do-It-Yourself (DIY) medicine/describe factors influencing expansion.

2. Discuss the impact of DIY medicine on both clinical practice and clinical research.3. Discuss the potential promise and peril of the changes that DIY medicine will bring to

health care.4. Discuss the role of the Quantified Self & mobile health applications in patient-

centered care.

Lectures:

a. Do-It-Yourself Medicine (20:34)1. Definition of Do-It-Yourself (DIY) medicine2. Connected Health3. Examples of DIY medicine4. Digital clinical research tools and crowdsourcing5. Benefits and risks of DIY medicine

b. The Quantified Self & mHealth (18:03)1. Definition of quantified self2. Current trends and examples of quantified self (tools, apps, devices)3. Challenges and benefits of integrating data from quantified self with traditional

health data

Suggested Readings

Sarasohn-Kahn, J. (2015, January 28). Your Home Is Your DIY Medical Home. Retrieved April 05, 2016, from http://www.huffingtonpost.com/jane-sarasohnkahn/your-home-is-your-diy-med_1_b_6500746.html

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Castelao, L. (2012, March 3). The Quantified Self. The Economist. Retrieved January 31, 2016, from http://www.economist.com

Unit 4: Supporting Patient-Driven Care Coordination

Description:

The use of health IT tools is to place the patient at the center of all care activities. This unit will explore the use of technology to support and enable patient-driven coordinated care.

Objectives:

1. Explain the importance of patient-driven care coordination.2. List ways a patient can use technology to drive care decisions.3. Describe the concept of patient-initiated information exchange.

Lectures:

a. Patient-Initiated Information Exchange (11:071. Information Exchange2. Technology3. Blue Button4. iBlue Button5. Personal health record6. Patient portal7. Barriers

b. Patient Preferences for Information Sharing (6:35)1. Need for information sharing2. Tools3. Organizations4. Current state5. Patient-provider partnership6. Demographic considerations7. Challenges

c. Information-Driven Patient Education (12:00)1. Definition of patient education2. What patients want3. Vision4. Technology: television, Video/DVD, Internet, email, apps and games, EHR-

driven, patient portals5. Barriers: health literacy, language, culture, technology

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d. Health IT-Supported Communication between Primary Care Provider and Specialist (07:24)1. Introduction2. Background3. Patient-driven care coordination4. Information needs5. Technology tools6. Barriers7. Solutions

Unit 5: Patient-Provider Communication

Description:

Effective and efficient communication is a critical skill that has the potential to promote patient-centered care (PCC). Health IT can facilitate communication between patients, caregivers, and providers by providing access to needed information and interactive tools. This unit will examine the principles of communication, as well as the informatics underpinnings, challenges, and social issues involved when putting communication at the center of PCC.

Objectives:

1. Explain the importance, elements, and processes of patient-physician communication.

2. Discuss the concept of trust in the context of health care interactions.3. Describe various informatics tools and the practical considerations to support

patient-provider communication.

Lectures:

a. Overview (14:11)

b. Trust and Respectful Interactions (17:32)

c. Informatics Tools to Support Patient-Provider Communications (17:30)

Unit 6: Communicating Health Risk

Description:

Risk communication is an essential component to health risk management, shared medical decision-making, health risk appraisal, and informed consent. There is substantial evidence to demonstrate that providing patients with risk information improves accuracy of risk perceptions, increases their understanding and knowledge of treatment decision options, and promotes informed decision-making. One of the many

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challenges to risk communication with patients is the difficulty in expressing quantitative information in a comprehensible form. Risk communication can be difficult and confusing even for the most skilled and motivated, and these issues are exasperated among the less numerate. This unit will focus on specific guidelines and methods designed to present risk data in a way that maximizes understanding and minimizes unintended bias.

Objectives:

1. Define risk and its importance in patient-centered care and decision-making.2. Describe the challenges in communicating risks.3. Describe methods of overcoming those challenges through structured

communication and IT.

Lectures:

a. Overview (07:21)1. Risk, probability, and decision-making2. Innumeracy, cognitive biases, and dual-processing cognition

b. Evidence-Based Methods (18:35)1. Graphical static methods of communicating risk and their proper use2. Dynamic methods of communicating risk and their proper use

Unit 7: Shared Decision-Making

Description:

Shared decision-making (SDM) is a collaborative process that allows patients and providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. This unit will cover barriers, implementation strategies, and the interactive tools that are designed to support shared decision-making in health care delivery.

Objectives:

1. Describe shared decision-making.2. Explain the use of decision aids and how they facilitate shared decision-making.3. Debate alternative strategies to implement decision aids within workflows.

Lectures:

a. Introduction (16:17)1. Definition2. Appropriateness3. Need for shared decision-making

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4. Steps in shared decision-making process5. Misconceptions6. Interprofessional Shared Decision-Making (IP-SDM) Model7. Adoption

b. Patient Decision Aids (14:25)1. Synonyms2. Uses3. Measurement of shared decision-making4. International Patient Decision Aid (IPDAS) Collaboration5. Standards for qualification6. Support for shared decision-making7. Resources

Unit 8: Precision Medicine

Description:

This unit will examine the current initiatives as well as the informatics underpinnings, challenges, and legal, ethical, and social issues involved in the practice of precision medicine.

Objectives:

1. Define precision medicine and key concepts associated with it.2. Describe the major current applications in the practice of precision medicine.3. Discuss national initiatives including the NIH Precision Medicine Initiative.4. Describe the activities of national research networks focused on precision medicine.5. Discuss the challenges of implementing precision medicine in clinical practice.6. Discuss the ethical, legal and social issues in precision medicine.

Lectures:

a. Precision Medicine part 1 (17:11)

b. Precision Medicine part 2 (19:16)

Suggested Readings

The White House. The Precision Medicine Initiative.  Available at: http://www.whitehouse.gov/precision-medicine

Gottesman O, Kuivaniemi H, et al.  The Electronic Medical Records and Genomics (eMERGE) Network: past, present, and future. Genet Med. 2013 Oct;15(10):761-71. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3795928/pdf/gim201372a.pdf

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Burke W, Evans BJ, Jarvik GP. Return of results: ethical and legal distinctions between research and clinical care.  Am J Med Genet C Semin Med Genet. 2014 Mar;166C(1):105-11.  Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078921/pdf/nihms-602584.pdf

Unit 9: Patient-Oriented Data Analytics

Description:

This unit explores data analytics for the patient and related to the patient. Methods for engaging patients using data and analytics, including social media, apps, patient portals, PHRs, and other tools will be surveyed. Considerations for presenting data from those tools will be discussed. Data and the presentation of data related to the patient experience, especially patient satisfaction and patient-reported outcomes, will be examined.

Objectives:

1. Compare and contrast advanced methods of patient engagement, including social media, apps, patient portals, patient health records (PHRs), and other tools

2. Format clinical information for maximum patient understanding3. Employ effective methods for engaging with patients regarding data analytics4. Summarize key considerations for the collection of patient-reported outcome data5. Delineate the benefits and challenges of utilizing patient satisfaction data for

analytics6. Identify the most appropriate data methods for reporting on the patient experience of

care

Lectures:

a. Methods for Patient Engagement (10:02)1. Improving patient experience2. Display of clinical information (especially laboratory data and use of technical

terminology) for patients3. Methods of patient experience of care4. Interpretation of patient data so collected?5. Engaging and communicating with patients about analytics, including experience,

risk scoring, shared decision making, and QI6. Advanced methods of patient engagement using m-Health, PHRs, and other HIT

tools

b. Methods for Patient Engagement (9:19)1. Collection of patient-reported outcomes2. Patient satisfaction

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3. Patient experience

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Component AuthorsComponent Developed by:

Assigned Institution:Bellevue College

Columbia University

Johns Hopkins University

Normandale Community College

Oregon Health & Science University

University of Alabama-Birmingham

University of Texas Health Science Center at Houston

Team Lead(s): Rita Kukafka, DrPH, MA, FACMI, Columbia University

Primary Contributing Authors:

Eta S. Berner, EdD, FACMI, FHIMSS, Principal Investigator, University of Alabama-Birmingham

Peter Elias, MD, Society for Participatory Medicine

Eric Ford, PhD, MPH, Johns Hopkins University

Rita Kukafka, DrPH, MA, FACMI, Columbia University

Brenda Kulhanek, PhD, MSN, MS, RN-BC, American Nursing Informatics Association

Tony Ortiz, Society for Participatory Medicine

James H. Willig, MD, University of Alabama-Birmingham

Lecture Narration

Voiceover Talent (Columbia University): Ned Boyle, Renee Dutton O’Hara

Voiceover Talent (Johns Hopkins University): Ned Boyle, Renee Dutton-O’Hara

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Voiceover Talent (University of Alabama at Birmingham): Milton Bagby

Voiceover Talent (University of Texas Health Science Center at Houston): Susan Fenton

Sound Engineer (Columbia University): Angie Lee, Center for Teaching and Learning, Columbia University

Sound Engineer (Johns Hopkins University): Judith Schonbach, Center for Teaching and Learning, Johns Hopkins Bloomberg School of Public Health

Sound Engineer (University of Alabama at Birmingham): Bryan Talbot, Talbot Sound, Nashville, TN

Team Members:

Sunny Ainley, BBA, BA, Principal Investigator, Normandale College

Areebah Ajani, MA, Instructional Design, The University of Texas Health Science Center at Houston

Meg Bruck, MSHI, CHTS-IM, Project Manager, University of Alabama at Birmingham

Raven David, MPH, CHTS-PW, Project Manager, Columbia University

Patricia Dombrowski, Principal Investigator, Bellevue College

Susan Fenton, PhD, RHIA, FAHIMA, Principal Investigator, The University of Texas Health Science Center at Houston

Joseph Finkelstein, MD, PhD, Columbia University

William Hersh, MD, FACP, FACMI, Principal Investigator, Oregon Health & Science University

Hadi Kharrazi, MD, MHI, PhD, Principal Investigator, Research Director of the Center for Population Health IT, Johns Hopkins University

Harold Lehmann, MD, PhD, FACMI, FAAP, Principal Investigator, Director of the Division of Health Sciences Informatics, Johns Hopkins University

Josh F. Peterson, MD, Vanderbilt University

Jennifer Ringler, MHA Columbia University

Megan Robertson, BS, Project Manager, The University of Texas Health Science Center at Houston

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