Caring About Care: Boosting Patient Engagement in a Value-Based World

MGMA Operations Conference - Phoenix, April 23, 2018


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Highlights: When you care for a family member or friend, we care for you. We’re a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand.

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Society for Participatory Medicine

Organization: Society for Participatory Medicine


Participatory Medicine is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare

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AHIMA Foundation

Organization: AHIMA Foundation

Highlights: The AHIMA Foundation improves health information management by supporting the people, research and resources that advance the HIM profession.

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Gynecological Oncology Working Group at UPMC

Organization: Gynecological Oncology Working Group at UPMC

Highlights: The Gynecological Oncology Working Group at Magee-Womens Hospital of UPMC focused one of their projects on reducing unnecessary readmissions as a result of what patients described as inadequacies in the discharge process and follow-up components of care. To address these concerns, the Working Group revised the workflow based on the feedback from the patient and families to make the current state ideal to their needs. For example, a pharmacist visits the patient at the bedside to provide them with their discharge medication just reducing the inefficiencies and increasing engagement.

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Center for Healthcare Innovation

Organization: Center for Healthcare Innovation


The Center for Healthcare Innovation (CHI) is an independent, 501(c)(3) non-profit research and educational institute that helps patients and providers increase their knowledge and understanding of the opportunities and challenges of maximizing healthcare value to improve health and quality of life.  We aim to make the world a healthier place.  CHI encourages and enables meaningful and executable innovation that aims to address existing and ensuing healthcare dynamics through communication, education, training, symposia, reports, and research.  By bringing the best and brightest healthcare leaders from all over the world together to share their ideas and expertise, CHI creates a unique opportunity to address and improve healthcare value, which we view as a function of quality, access, and cost.

  1. Bring together key stakeholders to develop collaborative relationships to positively impact healthcare value
  2. Increase understanding of the definition, framework, and metrics of healthcare value
  3. Produce primary, impactful research focused specifically on the intersection and interplay of healthcare quality, access, and cost
  4. Analyze fundamental drivers and trends of rapidly rising healthcare costs
  5. Identify and disseminate best practices for optimizing healthcare quality and access

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Kaiser Permanente HealthConnect

Organization: Kaiser Permanente HealthConnect

Highlights: In 2012, nearly 50 percent of contacts between patients and primary care providers at Kaiser Permanente took place over the phone or through secure emails. Through what initially started as a patient portal, the system has since piloted programs to supplement face-to-face visits. They currently have remote primary care, neurology, virtual inpatient rounding, mental health, and dermatology programs in various stages of implementation.

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Atlas CareMaps

Resource: Atlas CareMaps


Caregiving happens within an ecosystem. Caregivers and the ones they care for are situated in systems of support, connected to others through networks and webs of relationships, shared experiences, and interactions.

At Atlas of Caregiving, we believe that in order to improve systems, we must first understand them. In this spirit, we’ve made it our mission to create practical tools that build on our understanding of the experiences of family caregivers while helping families and professionals better understand, and ultimately improve, their own lives. The first of these tools is the CareMap.

  • On this site, we have provided in detail  all the instructions and support you will need to draw your own CareMap.
  • On the Draw Your Own CareMap page, you will find a video that walks you through using the CareMap tool. You will also see Key Features and Tips.
  • On the Hand-Drawn CareMaps page, we have provided you video and instructions on how to draw a hand-drawn CareMap.
  • All CareMap instructions are available in Spanish, too. For the hand-drawn instructions, click here.

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Implementing Patient- and Family-Centered Rounds

Resource: Implementing Family- and Patient-Centered Rounds


Each hospital’s setting is unique, so there is no best way to implement patient- and family-centered rounds.  We are happy to share what we have learned from our experience at Cincinnati Children’s and from teaching patient- and family-centered rounds at conferences and workshops.

Understanding each other’s points of view is an essential starting point.   We have learned that when physicians, nurses, allied health professionals and patients and their families discuss patient- and family-centered rounds, they are more likely to implement them.

We have created a facilitator guide and a series of video vignettes to assist you in your implementation strategy.  We hope these tools lead to a rich discussion among you, your colleagues and your patients and their families and will assist you in successful implementation of patient- and family-centered rounds at your institution.

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Health Literacy Tools for Providers of Medication Therapy Management


Highlights: From the Agency of Healthcare Research and Quality (AHRQ) – Medication Therapy Management (MTM) is a patient-centric and comprehensive approach to improve medication use, reduce the risk of adverse events, and improve medication adherence. These health literacy tools can improve communication with MTM patients.

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The Patient Revolution

Resource: The Patient Revolution


Stories can inform, infect, irritate, and ignite a chain reaction that makes the status quo unsustainable. Stories are the first step in a push for healthcare that is careful and kind to each patient and community.

Our mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.

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Roobrik Decision Aids

Tool: Roobrik Decision Aids

Highlights: Free online decision tools to help patients and their families make difficult health and care choices with clarity and confidence.

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Engaging Family Caregivers as Partners in Care Transitions

Resource: Engaging Family Caregivers as Partners in Care Transitions

Highlights: A United Hospital Fund Special Report by Carol Levine and others. The goal: to take on the challenge of examining how chronically ill patients are transitioned
from one care setting to the next, and how that transition could be improved by systematically involving family caregivers and arming them with better information, training, and support. Specific strategies to achieve that goal were:
• Inclusion of the family caregiver in medication reconciliation;
• Identification of post-discharge patient needs and discussion of patient discharge options with the
family caregiver;
• Discharge preparedness (training, expectations of the day of discharge);
• A well-orchestrated day of discharge;
• Closing the loop, including post-discharge communication with the family caregiver and the
receiving agency

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Healthcare BlueBook

Tool: Healthcare BlueBook

Highlights: Proprietary site comparing costs of hospitals, physicians, imaging, labs, dental medications, procedures and more by zip code. Not everything has a cost range but appears to be growing in scope.

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Pfizer Vital Signs

Tool: Pfizer Vital Signs

Highlights: This tool, developed by the Clear Health Communication Initiative, can screen for patients with low health literacy in less than 3 minutes. For conversations with policy makers and community leaders, this tool can be used to demonstrate the range of health literacy skills people need to access and interpret health information.

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St. Elizabeth Hospital GetWell Inpatient

Tools: St. Elizabeth Hospital GetWell Inpatient

Highlights: St. Elizabeth Healthcare an integration-themed approach to engaging its patients. St. Elizabeth uses a technology that enables data exchange via a patient portal between third-party systems, allowing patients access to their health information while in the hospital and at home after being discharged. This also interfaces with EPIC to display orders placed, imaging, and prompt for re-checks.

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Determinants of Health

Resource: Determinants of Health

Highlights: Clinical care, the focus of our health systems, only account for 11% of our overall health. However, it is necessary to view health as a holistic measure of an individual’s entire living situation and life experience. These factors that strongly affect an individual’s overall quality of health are the determinants of health. Extending far beyond medical care, these factors can be used to improve health within the clinical, population, and public health spaces.

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Durga Tool #9 My Care Map

Tool: Durga Tool #9 My Care Map

Highlights: About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram which I shared with them

Find care map here

Patient Wisdom

Tool: Patient Wisdom


Our digital platforms improve health and care by listening to patientsproviders, and community members– individually and at scale. We drive value by distilling real-world perspectives into meaningful, actionable insights to help health organizations become more responsive and successful.  This practical combination of digital and personal is the key to leading in the age of consumerism and value-based care.

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Ask Me

Tool: Ask Me


Ask Me 3® is an educational program that encourages patients and families to ask three specific questions of their providers to better understand their health conditions and what they need to do to stay healthy.

1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?

Designed by health literacy experts, Ask Me 3 is intended to help patients become more active members of their healthcare team, and provide a critical platform to improve communications between patients, families, and healthcare professionals.

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Ask Your Doctor

Tool: Ask Your Doctor

Highlights: AHRQ

Your health depends on good communication. Asking questions and providing information to your doctor and other care providers can improve your care. Talking with your doctor builds trust and leads to better results, quality, safety, and satisfaction.

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Get Involved / Advocacy

iCare Team

Get Involved: iCare Team


  • Connect family caregivers with initiatives where their voices can be heard
  • Educate researchers, policy makers, and healthcare providers on a range of caregiving issues through thought leadership
  • Provide guidance from a “boots-on-the-ground” perspective on challenges we face across the healthcare continuum
  • Spearhead caregiver-centric pilot programs
  • Partner with researchers, policy makers, and healthcare providers to solve problems from the family caregiver perspective

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Patient Centered Outcomes Institute (PCORI)

Get Involved: Patient Centered Outcomes Research Institute (PCORI)

Highlights: PCORI’s patient-centered, stakeholder-driven approach to healthcare research not only shapes the research that we fund, but also influences changes in the culture of research more broadly.

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Session Materials

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Panel Members

Danny van Leeuwen

Owner, Health Hats

As an action catalyst, I empower people traveling together toward best health (people as patients, caregivers, parents, clinicians, direct care staff, communities, and the people that support them). I wear many hats in healthcare:

-Patient with Multiple Sclerosis
-Care partner for several family members’ end-of-life journeys
-Nurse for 40+ years
-QI leader
-Husband, Father, Opa, Musician

I specialize in patient/ caregiver/ clinician/ community relationships and the intersection between technology and the health journey.

Vera Rulon

Founder and President, Tir Health Advisors LLC

Vera Rulon is senior advisor for healthy longevity for the PCHAlliance. She is the founder and president of Tir Health Advisors, LLC and is a member of the Executive Council for the Center for Healthcare Innovation. Her areas of expertise include healthy longevity, patient advocacy and engagement, and use of personal health information to improve outcomes, with a focus on the use of technology to advance these areas.
Prior to starting her own company, Vera spent 18 years at Pfizer Inc. in various capacities incluing strategic communications for Pfizer Medical, Chief of Staff for Pfizer’s US external medical affairs team, and led a team to advance Pfizer Research & Development’s electronic clinical trial documentation systems globally. At Pfizer Vera led the technology and aging workstream for the Center of Excellence for Active and Healthy Aging. Before Pfizer, Vera managed the clinical informatics team at Oxford Health Plans.
Vera is a past president of the American Health Information Management Association (AHIMA) and is a Fellow of AHIMA. Vera is an active participant with the Society for Participatory Medicine and chairs their policy committee. She is the recipient AHIMA’s Distinguished Member award, AHIMA Visionary Triumph Award and was designated a PharmaVoice 100 as a change agent.

Join the Conversation

Scroll to the bottom of the page to ask the panelists questions or enlighten us. The more the merrier!

Blogs and Columns

Caring for the Ages: Care Transitions

Column: Care Transitions

Highlights: Journal of The Society for Post-Acute and Long Term Care Medicine. Mary Anne Sterling has several columns here: Mobilizing Former Caregivers and Adults Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s

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Patient Engagement Tip of the Month

Blog: Patient Engagement Tip of the Month

Highlights: Geri Lynn Baumblatt coordinates and writes for this blog

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Health Hats

Blog: Health Hats

Highlights: Danny van Leeuwen – Empowering people as they travel together toward best health. Use search terms: Caregiving, caregiver to find relevant posts

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Articles and Blog Posts

There is a Place at the Research Table for Patients and Family Caregivers

Blog Post: A New Era in Alzheimer’s Research has Arrived, and There is a Place at the Table for Patients and Family Caregivers

Highlights: By MaryAnne Sterling on PCORI’s blog about the Patient-Powered Research Network (PPRN) focused on Alzheimer’s disease and other dementias.

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Patient value: Perspectives from the advocacy community

Article: Patient value: Perspectives from the advocacy community

Highlights: 2018 open access review article in Health Expectations highlighting value of patient perspective in research and operations. Authors from advocacy organizations in US, Canada, and the UK

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Tell me the damn cost upfront

Blog post: Tell me the damn cost upfront

Highlights: $117,000 surprise medical bill? Out-of-network surgeon assistant charged $117,000. Insurance didn’t pay. We had a major siding job done on our house recently. Imagine if the contractor had brought in a subcontractor unannounced and charged an additional $10,000 that we had no choice but to pay. No cost transparency

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Communication at Transitions-One Audacious Bite at a Time

Article: Communication at Transitions-One Audacious Bite at a Time

Highlights: Written by Danny van Leeuwen in the Journal of Participatory Medicine. our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey.

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An American Sickness: How Healthcare Became Big Business and How You Can Take It Back

Book: An American Sickness: How Healthcare Became Big Business and How You Can Take It Back

Highlights: Elisabeth Rosenthal’s groundbreaking work investigating our dysfunctional healthcare system.

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A caregiver is NOT a caregiver, is NOT a caregiver

Blog post: A caregiver is [not] a caregiver, is [not] a caregiver

Highlights: Danny van Leeuwen writes: Whether you are a person with a chronic condition, a caregiver, a clinician, a health technology professional, insurer, policy wonk, or investor, understanding the dynamics of family caregiving will impact your success and effectiveness.

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Managing a Chronic Disease

Article:  Managing a Chronic Disease

Highlights: When you’re first diagnosed with a chronic disease or condition, you might feel like you’re on an unfamiliar road—and you have no idea what to expect. Managing your symptoms, treatments, and appointments can seem overwhelming. But you can find some simple steps to help guide your way.

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