Making Choices about Your Health with Your Team

IWMF Conference - Chicago, May 17, 2018


Let us know if you have Organizations, Tools, Articles to add



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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Family Caregiver Alliance

Organization: Family Caregiver Alliance


Founded in the late 1970s, Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home.

FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.

The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.

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VA Caregiver Support

Organization: VA Caregiver Support

Highlights: Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support Program offers training, educational resources, and multiple tools to help you succeed. Please contact our Caregiver Support Line for advice on being a caregiver.

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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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Wendy S. Harpham, MD

Resource: Wendy S, Harpham, MD


Wendy S. Harpham, a doctor of internal medicine, 27-year cancer survivor, best-selling author, nationally recognized speaker and patient advocate. From both sides of the stethoscope, Wendy has used her useful perspective to help patients become Healthy Survivors — namely, survivors who get good care and live as fully as possible.

Since her diagnosis, Wendy has played an important role in raising awareness among clinicians and in empowering patients to talk with their healthcare team about the challenges of survivorship, such as coping with post-treatment fatigue, raising healthy children when a parent has cancer, and participating in clinical trials.

Motivated by her commitment to fostering healing clinician-patient bonds, Wendy’s latest projects focus on helping patients both nourish healthy hopes and narrow the gap between knowing what to do and actually doing it.

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Organization: Caring.Com

Highlights: Senior Care Reviews and Resources. Find Senior Living Near You

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Caregiver Action Network

Organization: Caregiver Action Network

Highlights: iCAN Tech helps you sort through the world of high-tech caregiving products.

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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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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

Find the blog here

Articles and Blog Posts

Caring for the Caregiver in the Emergency Department

Article: Caring for the Caregiver in the Emergency Department

Highlights: Assessing a caregiver’s roles, capacities, vulnerabilities, and strengths, when done well, is a nonjudgmental process conducted by expert staff members who have the time and training to appreciate these often complex situations as well as a deep, practical understanding of possible solutions.

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Mobilizing Former Family Caregivers

Article: Mobilizing Former Family Caregivers

Highlights: Written by MaryAnne Sterling, published in Caring for the Ages in December 2017

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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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Time to Go Home: Hospice Care Transitions

Blog Post: Time to Go Home: Hospice Care Transitions

Highlights: Regina Holliday writes

It is a pattern oft repeated in a lifetime:
You go to the doctor’s office, get a prescription, and go home.
You go to the urgent clinic, get care, and go home.
You go the hospital, get better, and go home.

But some people are very surprised when they go to inpatient hospice, are stabilized and told to go home.

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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.

Find post here

Session Materials

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Danny van Leeuwen

Health Hats

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.

Join the Conversation

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


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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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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