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Patient Engagement: Current and Future State

CEO of my health. Citizen participation as advisors at the tables of governance, design, operations, & learning in healthcare delivery, policy, and research


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

Patient Centered Outcomes Institute (PCORI)

Health Hats Resources

Podcast Episodes, Blog Posts, Articles, Interviews

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.

Find website here

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

Find website here

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

Find website here

Patient-Centered Clinical Decision Support Learning Network


An initiative supported by AHRQ (Agency for Healthcare Research and Quality). Patient-Centered Clinical Decision Support is CDS that supports care for specific* patients, where a major role is played by one or more of these patient-centered factors:

Knowledge: Evidence-based research findings (CER and PCOR);

Data: Patient-generated health data, patient-reported outcomes and preferences, and/or patient-specific social/environmental/genetic/cultural factors as they affect individual patient health;

Use: Patient (and/or caregiver) involvement in consuming and applying the decision support provided (e.g. information directed at patients/caregivers or for shared decision making)

*Note specific patients can include populations if one or more individual patients are supported (as opposed to just supporting a cohort more broadly)

Find website here

MHQP: Resources for Empowered Patients

MHQP Resources for Empowered Patients

Resource Type: Website


Members of MHQP’s Consumer Health Council – experienced patient advocates and activists – have created this website to share their knowledge and insights with other patients. The site lists the tools, guidelines, and information you may need to manage your health, interact with clinicians and the healthcare system, and find answers to questions you may have. The articles and links included under each topic will help you become a more empowered and engaged patient/consumer of healthcare services.


The Massachusetts Health Quality Partnership created a rich resource for patients and caregivers learning to lead as they manage their health journeys. Well done.



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.

Find website here

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

Find website here

EU Patient Empowerment Campaign

Organization: EU Patient Empowerment Campaign

EPF officially launched a major one-year campaign on Patient Empowerment on 20-21 May 2015. We will work in concert with the health community to promote understanding of what patient empowerment means from the patient perspective among political decision-makers and health stakeholders.
“Patients with chronic conditions are often referred to as the most under-used resource in the health system while patient-centered care models have demonstrated better quality of care as well as potential long-term cost-efficiencies. Too many patients are still struggling to get the support they need to become equal partners in care. To make real progress, we need to make patient empowerment a priority, starting with the development of an EU-wide strategy and action plan”

Find Website Here

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


Blog: Health Blawg

Highlights: A health care lawyer and consultant with over thirty years of public and private sector experience, which has given me a unique perspective on legal, policy and business issues facing the health care community. I focus on digital health law and policy, starting with HIPAA and state law health care data privacy and security planning and compliance for covered entities and business associates, including health care providers, big data analytics shops and health app developers.

Find the blog here

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

Find website here

Patient Engagement Tip of the Month

Blog: Patient Engagement Tip of the Month

Highlights: Geri Lynn Baumblatt coordinates and writes for this blog

Find the website here

Participatory Medicine as Revolution! Think Critically! Communicate!

Blog Post

In 2009 Society of Participatory Medicine co-founder, Sarah Greene wrote about ‘praxis’- active learning, or problem-solving using real-life situations, is necessary for the individual to translate theory into action or practice – the similarities of participatory medicine and education.

Find post here

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.

Find article here

How Leading Health Systems Put Patients and Families at the Forefront of Design

Research study

by the Experience Innovation Network, part of Vocera,
examining how hospitals and health systems engage patients and families
as partners in designing and developing the future of caring.
• Engage patient-family partners across the spectrum from strategy to operations.
• Let patient-family partners influence both the what and the how of transformation.
• Prepare both patient-family partners and team members for effective collaboration.
• Create intentional strategies to include under-represented partners.
• Value patient-family partnership appropriately.

Find study here

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

What do empowered and engaged really mean?

Video: What do empowered and engaged really mean?

In participatory medicine, we say that e-patients are “empowered and engaged.” But what does that really mean, in practice? This 9-minute presentation by ePatient Dave deBronkart offers good working definitions of these too-often-fuzzy terms.

Find video here

Methods and impact of engagement in research, from theory to practice and back again

Article: Methods and impact of engagement in research, from theory to practice and back again

From Quality of Life Research journal. Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI’s evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners.

Find Open Access article here

What’s the Problem with the Experience of People at the Center of Care?

Health Hats Blog Post:  What’s the Problem with the Experience of People at the Center of Care?

Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey.  At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I’m reminded that not everyone is so lucky. As I scan the industry several problems with the experience of the people at the center of care (patients, caregivers, clinicians, direct care and support staff) jump out

Find post here

Session Materials

Click to open panel on slider. To Print a PowerPoint slide deck, click on open with PowerPoint. When open click on banner to edit, then print as you usually would.  Or e-mail me and I’ll send you the file.


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!


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.

Find website here

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.

Find website here

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.

Find website here

IHI Institute for Healthcare Improvement

Tools: IHI Institute for Healthcare Improvement

The goal is to focus on patient engagement and emphasize the importance of the relationship between providers and patients and their families. In honor of this week, I’d like to highlight some of the resources IHI has developed for care providers, middle managers, executives, boards, and others to encourage patient and family engagement.

*PROMISES (Proactive Reduction of Outpatient Malpractice: Improving Safety, Efficiency, and Satisfaction) Project

*Partnering in Self-Management Support: A Toolkit for Clinicians

*Strategies to improve communication between providers and patients during the office visit.

Find website here

Patient Activation Measure

Tool: Patient Activation Measure

Controlling costs and achieving health care quality improvements require the participation of activated and informed consumers and patients. We describe a process for conceptualizing and operationalizing what it means to be “activated” and delineate the process we used to develop a measure for assessing “activation,” and the psychometric properties of that measure.

Find link here

Durga's Care Map

What it takes to manage the complex care of her special needs son. Cristin Lind’s Care Map for her son, Gabe. All the determinants of health. I use this graphic more than any other in my work.

Find article here



If Air Travel Worked Like Health Care

Humor: If Air Travel Worked Like Healthcare


Find Video here

What if Your Hotel Bill Was Like a Hospital Bill?

Humor: What if Your Hotel Bill Was Like a Hospital Bill?

Health care costs are notoriously opaque, often leaving patients saddled with unexpectedly high bills and making it challenging for them to understand their expenses. To make matters more complicated, doctors, nurses and other caregivers are seldom in a position to understand how their decisions impact what patients pay for care. The Costs of Care Teaching Value Project aims to change this by empowering caregivers with the information they need to deflate medical bills. Learn more at

Find video here

Tim Conway's "The Dentist" (FULL)

Video: Tim Conway’s “The Dentist” (FULL)

Still one of the funniest sketches in television history.

Find the video here

Damaged Care: A Musical Comedy About Health Care in America

Humorous Video: Damaged Care: A Musical Comedy About Health Care in America

Damaged Care: The Musical Comedy About Health Care in America, written and performed by Greg LaGana, M.D., and Barry Levy, M.D., focuses on health care issues of concern to everyone, ranging from the erosion of the doctor-patient relationship to “superbugs.” During the past 19 years, they have performed Damaged Care almost 140 times in 28 states and Canada, for organizations ranging from the American Medical Association and many state medical societies and hospital associations to the Federal Reserve Bank of Boston. They have also performed on Capitol Hill and frequently Off-Off-Broadway in New York. Damaged Care has been featured in the New York Times and the Boston Globe, on CNN Headline News, and ABC Nightline. More information about Damaged Care can be found at:

Find video here

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