Resources for Empowered Patients 2019-11-12T02:46:01+00:00

Resources for Empowered Patients

Actions to Help You Manage Your Care

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.

Patients today are taking a more active role in their health care. The materials in this section highlight the importance of being engaged in your care and help you take the first steps.

EngagedPatients.org
Engaged Patient campaign’s website
This site provides information about the Engaged Patients national campaign to ensure free access to the tools and the resources patients and their loved ones need to be fully informed and participating members of their health care teams. Numerous tools are included.

Patient and Family Engagement
Partnership for Patients Website
This site identifies patients and their families as essential partners in improving the quality and safety of health care for all Americans and points to helpful resources for increased engagement.

How to Be an Engaged Patient or Caregiver
Better Health While Aging Website
This post provides practical suggestions for aging patients and family caregivers to become more engaged in their care.

How to Be an Active Patient
University of Rochester Medical Center Website
This site offers helpful suggestions for being an active patient.

How to Be an Empowered Patient
US News and World Report
This column provides advice from experts about how to advocate for yourself in a hospital.

Questions to Ask Your Doctor
Agency for Healthcare Research and Quality website
This site provides lists of questions to ask your provider before, during, and after your appointment.

A Doctor’s Guide to a Good Appointment
A New York Times article
This article is a doctor’s advice for patients and family/caregivers on how to make the most of a medical visit.

Patient Prep Card
Agency for Healthcare Research and Quality website
This site provides a visit preparation card that can be filled in and brought to your visit.

How to Create a Pill Card
Agency for Healthcare Research and Quality website
This site provides a guide to create an easy-to-use “pill card” for those who may forget when to take their different medicines.

Next Steps After Your Diagnosis
Agency for Healthcare Research and Quality website
This site gives you a step-by-step guide as to what to do after you have been diagnosed with a new condition. Next steps after your diagnosis: finding information and support.

Guide to Choosing a Hospital
Medicare.gov website
This official US government booklet explains the steps to find and compare hospitals, discusses why hospital quality is important, and provides information about Medicare and hospital stays.

9 Signs You Should Fire Your Doctor
US News & World Report article
This article discusses the fact that seeing a doctor you’re unhappy with could be bad for your health and explains how to know when to look elsewhere.

This section covers the options available to various segments of the population. It provides answers to help you as a patient understand health insurance plans that are available. It also helps you understand terminology such as cost of care, covered services, employee health plans, COBRA, co-payments, deductible, and more.

How to Buy an Individual Health Insurance Plan
Wall Street Journal “How To” Guide on Health Costs website
This site presents information for those buying their own health insurance to help you understand what you’re buying, and to help you chose the insurance that is best for you.

3 Things to Know Before You Pick a Health Insurance Plan
Healthcare.Gov website
This site has general information about different types of health plans and how to select one for you and/or your family. While it is for people who are buying insurance on their own, it gives information that can be helpful for those insured through their employer, Medicaid, or Medicare as well.

How do Deductibles, Co-insurance, and Copays Work?
Blue Cross Blue Shield of Michigan website
This website presents an excellent guide on how to understand health insurance, including what is a deductible and what is a co-pay as well as a lot of information on understanding your benefits even if you do not live in Michigan.

The actual cost of your healthcare is one of the most complicated and challenging issues that you will face on your healthcare journey. This section contains guidelines and explanations about how to determine your cost of care today and in the future and plan for that. It covers alternative ways for patients to receive care that can be more accessible and affordable and points you to information that helps you understand your health plan benefits.

How to Talk to Your Doctor About Medical Costs
Consumer Reports website
This article discusses why it is important to discuss costs with your providers and how to do so. 

How to Talk to your Doctor—and Save Money
Fidelity Investments website
This article interviews a practicing neurologist and medical director at Consumer Reports who gives advice on how to talk with your providers about medical expenses and the importance of doing so to help you become a truly empowered patient.

Questions That May Save You Money at the Doctor’s – WebMD
WebMD website
This article presents five questions to ask your provider that could be helpful in limiting your health care expenses.

The Challenge of Understanding Health Care Costs and Charges
AMA Journal of Ethics website
This article discusses the challenges of getting to actual costs and some steps that providers can take such as making sure they are providing only needed care.

How to Research Health Care Prices
Wall Street Journal “How To” Guide on Health Costs website
It is hard for healthcare consumers to learn how much doctor visits or hospital stays will cost them. This article gives some suggestions on where to look for cost information.

By Not Discussing Cost Issues, Doctors, Patients May Miss Chances To Lower Out-Of-Pocket Expenses
Kaiser Health News website
This webpage reviews a study published in Health Affairs that explores the ways that doctors communicate with patients that prevent real discussions of costs and can undermine a patient’s health.

THE COST OF DRUGS


Providers, insurers call for strong enforcement of drug price transparency
Modern Health Care website
This article reviews the position of providers and insurers on the Center for Medicare and Medicaid’s (CMS) actions to make drug prices transparent and suggests additional actions that should be required such as posting the wholesale acquisition cost and having Medicare pay for physicians to discuss drug costs with patients.

Rising Drug Prices: Impact on Patients and Pharmacy
Wolters Kluwer webpage
This article discusses how complex drug pricing is and the multiple actors involved. It suggests what pharmacists can do to help patients.

Cost & Value of Medicines | PhRMA
PHARMA website
On this site the pharmaceutical industry discusses the slowdown in medicine cost growth, the rising cost of chronic disease, insurance coverage of medicine, the role of middlemen, and what the industry can do to make medicine more affordable for patients.

Communication between you and your clinicians is key to good healthcare delivery. These articles and resources review the importance of productive communication and recommend ways to effectively communicate with your provider. 

Communicating with Your Doctor
University of California San Francisco Health website
The relationship with a doctor is a very personal one, built on communication and trust. This article outlines some things you can do to help build an effective partnership.

Talking to Your Doctor
National Institutes of Health website
This site has videos that discuss how to prepare for your medical appointment, talk openly with your medical provider, and understand your diagnosis and treatment.

Questions to Ask Before, During and After Your Appointment
Agency for Healthcare Research and Quality website
This site gives you a list of questions you may want to ask before, during, and after your visit so that you can be an informed and engagement patient.

Building Your Own List
Agency for Healthcare Research and Quality website
This site walks you through the questions to bring to your next appointment based on the purpose of your visit, e.g. to talk about a health problem, to get a new medication.

Getting Ready for Your Ambulatory Care Surgery
Agency for Healthcare Research and Quality website
This site provides information on how to prepare for your surgery, what to expect the day of your surgery, and what to expect on the day of your surgery.

Patient-Centered Care Starts With Patient-Provider Communication
Health Affairs blog
This academic article presents findings from the Health Reform Monitoring Survey that demonstrate the need for improvement in patient-provider communication and suggests strategies for improvement.

EXAMPLES OF PATIENTS’ COMMUNICATING WITH MEDICAL PROVIDERS


Patients Typing their Own Visit Agenda in an EMR: Pilot in a Safety-Net Clinic
Annals of Family Medicine website
This paper describes a study in a clinic where patients typed their own agenda into the electronic visit note before seeing their clinician. Patients and clinicians agreed that the agendas improved patient-clinician communication.

Cristin Lind: Parenting a Child in Hospital
The BMJ Opinion website
This article is written by a parent of a child with chronic health care needs. Lind describes things she learned to do and ways she became engaged in order to ensure that her child received the right care and that the child’s parents were true partners in the decisions that were made.

Patients and Provider Discuss the Importance of Asking Questions
Agency for Healthcare Research and Quality website
This site has short videos, where patients talk about how simple questions can help you take better care of yourself, feel better, and get the right care at the right time. Doctors and nurses talk about how your questions help them take better care of you and give advice on how you can be an active member of your healthcare team.

My Family Health Portrait  
Center for Disease Control and Prevention website
This website houses My Family Health Portrait, a portal in which you can enter your family health history, learn about risk for conditions that can run in families, and print and save your family health history so you can update it over time.

COMMUNICATING WITH YOUR CHILD’S MEDICAL PROVIDERS


Partnering with your Child’s Provider  (In Spanish)
Family Voices.org website
This site has a page called Tips Caring for a Child with Special Healthcare Needs. The page gives information to help parents partner with their child’s health care provider.

Child Well-Visit Planner  (In Spanish)
Well Visit Planer website
This site presents a personalized visit guide for your child’s next well-care visit based on national recommendations for parents/guardians of children 4 months to 6 years old.

Health Care Visit Check List for all Children Including Children with Special Health Care Needs
Family Voices Impact website
This site gives information on choosing a provider, preparing for a visit, and what to do during and after the visit to ensure information is shared from you to the provider and from the provider to you.

Concerned about Development? How to Talk with the Doctor
Center for Disease Control and Prevention (CDC) website
This site gives guidelines for getting help for your child when you are concerned about his or her development (how your child plays, learns, speaks, acts, and moves).

Parents’ Guide to Getting Good Care
Child Mind Institute website
The guide on this site takes you through the steps to finding the best professional (or team) to treat your child who has behavioral health or learning problems.

A Guide for Sharing Information about a Child’s Care
Massachusetts Child Health Quality Coalition website
This guide, Communication Matters, provides information that will help to ensure good communication among four pediatric care teams: 1) children, youth, and families; 2) primary care providers; 3) behavioral health providers; and 4) schools.

SENIOR CARE 


Talking with Your Doctor: Tips for Seniors Infographic
National Institute on Aging website
This site has an infographic that can be used with older adults to help them get the most out of their medical visits.

Care Plans for Caregivers: The Secret to Confident Caregiving
Aging Care website
This site provides information that you, as a caregiver, can use to create a care giving plan that includes contingencies.

MENTAL HEALTH CARE


Taking Charge of Your Mental Health
National Alliance on Mental Health website
This infographic provides information on how to ask your doctor for a mental health referral, what to ask when meeting a mental health provider for the first time, and how to ask for a new referral if the first is not a good fit.

Parents’ Guide to Getting Good Care
Child Mind Institute website
The guide on this site takes you through the steps to finding the best professional (or team) to treat your child who has behavioral health or learning problems.

Care planning means that you and your primary care physician work collaboratively to determine those actions that will address your specific health needs. The resources available in this section enable you to understand your health issues; why and when you need a care plan; what you should include in your care plan; and how to work with providers on a plan that meets your needs. 

Care Plans for Caregivers: The Secret to Confident Caregiving
Aging Care website
This site provides information that you, as a caregiver, can use to create a care giving plan that includes contingencies.

Mental Health Care Plans
Victoria, Australia State Government website on health
This article outlines the reasons for a mental health care plan, and how to prepare one.

Cristin Lind: Parenting a Child in Hospital
The BMJ Opinion website
This article is written by a parent of a child with chronic health care needs. Lind describes things she learned to do and ways she became engaged in order to ensure that her child received the right care.

Deciding on a treatment plan
Agency for Healthcare Research and Quality website
This site provides information on the steps you should take after your diagnosis to decide on a treatment plan.

Partners Care Decisions
Partners Health Care website
This site presents a set of tools called Care Decisions that supports patients through an entire episode of care. Its three main programs are: patient reported outcomes; procedure order entry; and shared decision making.

Your Discharge Planning Checklist
Center for Medicare and Medicaid (CMM) website
This Medicare site has a checklist for patients and their caregivers who are preparing to leave a hospital, nursing home, or other care setting.

Patients today want access to their medical records and other health information so that they are fully informed and empowered to manage their health issues appropriately. These links and article discuss the many ways and programs available to patients to help them attain that access. 

How to Request Your Medical Records
Journal of the American Health Information and Management Association webpage
This webpage provides information on the steps you should take to request your medical records and the laws around medical record sharing.

How do I access my medical records?
Medical Records.com website
This article explains: ways to access your personal medical records in writing, release of personal health records – rights and fees, paperless medical records versus hard copies, and sensitive information.

How to Get Access to Your Hospital Records
US News & World Report website
As a patient, you’re entitled to your health information. This article tells you the steps you should take to get your hospital medical record.

Personal health records and patient portals
Mayo Clinic website
Personal health records and patient portals are powerful tools for managing your health. This article explains what each is and how to create a personal health record.

How to Get Copies of Your Medical Records: Understanding the Process, Cost, and Your Rights
Verywell Health website
This article reviews how to get copies of your medical records, including understanding the process, cost, and your rights.

Your Health Information, Your Rights: Video
Office of the National Coordinator for Health IT YouTube video
This site has a series of videos with information on how to get your health records.

Most patients have a need to see not only a primary care doctor, but other clinicians and specialists who can address all of their healthcare needs. Care coordination is a team effort that involves ensuring that all of your healthcare providers have access to your full health information records, test results, diagnoses, treatments and issues, so that when you are receiving care, the provider is aware of your other issues and needs and can take them into consideration.

Defining Care Coordination
Agency for Healthcare Research and Quality website
Care coordination means different things to different people. This US government site created a broad definition, a visual, graphic definition, and scenarios to help illustrate care coordination in the absence of a consensus definition.

What is Care Coordination?
New England Journal of Medicine Catalyst website
This article presents the elements of care coordination and provides examples of good coordination.

The Promise of Care Coordination: Transforming Health Care Delivery
Families USA website
This PDF gives a clearly written overview of what care coordination is, why it is important and how it should work. It includes several case studies.

PEDIATRIC CARE COORDINATION


Cristin Lind: Parenting a child in hospital
The BMJ Opinion website
This article is written by a parent of a child with chronic health care needs. In the article Lind describes things she learned to do to ensure good coordination, including understanding the roles of the professionals on the care team, considering herself as part of the care team and having a say regarding who is on the care team.

A Guide for Sharing Information about a Child’s Care
Massachusetts Child Health Quality Coalition website
This guide, Communication Matters, provides information that will help to ensure good communication among four pediatric care teams: 1) children, youth, and families; 2) primary care providers; 3) behavioral health providers; and 4) schools.

ACE Kids Act
Speak Now for Kids website
The Advancing Care for Exceptional Kids Act (ACE Kids Act) is a 2019 national law to improve how care is delivered to America’s children with complex medical conditions on Medicaid. This article describes what the new law will do.

Shared Decision-Making is the process in which clinicians and patients work together to make decisions about treatment, procedures, and medications necessary to address your health issues. This section outlines the importance of shared decision making and the ways in which it happens.

Shared Decision Making Fact Sheet
HealthIT.gov website
This fact sheet from the National Learning Consortium’s Advancing America’s Health Care website defines and outlines the importance of shared decision making.

AHRQ Ambulatory Care Improvement Guide: Shared Decision Making
Agency for Healthcare Research and Quality website
This government website presents the different aspects of shared decision making, including what providers and patients can do to increase shared decision making.

Shared Decision Making
HealthTalk and YouthHealthTalk.org website
The British National Health Service explores what is involved in shared decision making in this article.

The SHARE Approach
Agency for Healthcare Research and Quality website
The SHARE Approach includes a five-step process for shared decision making. The benefits and risks of options are explored through dialogue about what matters most to the patient.

What is Shared Decision Making?
MGH Health Decision Sciences Center website
This article from Massachusetts General Hospital defines shared decision making, explains why it is important, and presents tools to use to engage in shared decision making.

Mayo Clinic Shared Decision Making National Resource Center
The Mayo Clinic Shared Decision Making National Resource Center website
This site includes patient decision aids and shared decision making techniques that you might want to discuss with your doctor.

Partners Care Decisions
Partners Healthcare website
On this website you can learn about the Partners’ Care Decisions concept, one aspect of which is Shared Decision Making, and read about how it has impacted patients through Patient Success Stories.

Decision Aids to Facilitate Shared Decision Making in Practice
Cincinnati Children’s Hospital website
This site provides tools for patients and parents that explain the pros, cons, and trade-offs of medically reasonable options, with a focus on the option that reflects families’ preferences.

A-Z Inventory: Patient Decision Aids
Ottawa Hospital Research Institute website
The A to Z Inventory of Decision Aids is designed to help you find a decision aid to meet your needs. It contains up-to-date and available decision aids.

The Option Grid Decision Aids
EBSCO Health website
This company’s website describes its Options Grid Decision Aids that help providers and patients choose the health option that’s right for each patient.

EXAMPLES OF SHARED DECISION-MAKING


Patients Typing their Own Visit Agenda in an EMR: Pilot in a Safety-Net Clinic
Annual of Family Medicine website
This paper describes a study where clinic patients typed their own agenda into the electronic visit note before seeing their clinician. Patients and clinicians agreed that the agendas improved patient-clinician communication, enhancing care by engaging patients and giving clinicians an efficient way to prioritize patients’ concerns.

Cristin Lind: Parenting a child in hospital
The BMJ Opinion website
This article is written by a parent of a child with chronic health care needs. Lind describes things she learned to do and ways she became engaged in order to ensure that her child received the right care and that the child’s parents were true partners in the decisions that were made.

Patient feedback can help improve the quality of care providers deliver and it can make providers aware of changes they can make to improve their practice. This section provides tips and suggestions on how to give and get feedback on your experience when seeing your providers.

REVIEWING YOUR DOCTORS


How to Write an Online Review of Your Doctor
Verywell health website
This article discusses when you should post a review of your doctor and how to post responsibly.

Eight Tips for Writing Great Customer Reviews
Trust Pilot website
This site provides good general information on how to write reviews that will be listened to. It is not health care specific but provides some good guidelines in an infographic that summarizes the main points.

How to Rate and Review Your Doctor
CareDash.com website
This article gives tips on how to rate and review your doctor.

PUBLICLY AVAILABLE RESULTS FROM PATIENT EXPERIENCE SURVEYS


Healthcare Compass MA
Massachusetts Health Quality Partners website
Finding the right primary care doctor in Massachusetts is easy. Use this website to compare primary care doctors’ offices based on how well patients rate them on how they care for their patients.

Survey of Patients’ Experiences
Medicare.Gov website
This site gives information on the Medicare surveys of hospitals and providers along with results for each state.

FILING COMPLAINTS ABOUT YOUR PROVIDER


Should You Complain to Your Doctor?
Verywell health website
This article provides information on deciding when providing feedback will be productive and how to go about it in a balanced and most productive manner.

How to Complain or Provide Feedback to Your Doctor
Verywell health website
This article provides information on how to present your feedback to increase the likelihood that you will get positive results.

How to File a Complaint About a Doctor
Verywell health website
This site gives information on how and where to file a complaint about a doctor.

The Beryl Institute: Patient Experience Policy Forum
The Beryl Institute Website
This site describes the Beryl Institute’s Patient Experience Policy Forum, a coalition of those who want to give a greater voice in health care policy to those working to improve the patient and family experience.

It is often overwhelming when you have been a patient in the hospital and are released to go home. In this section you will find articles and guidelines about what you need to know as you leave the hospital and how to get the appropriate follow up care. 

A Guide to Understanding the Hospital Discharge Process and Providing Care to Patients Post-Hospitalization
Home Care Assistance.com website
This document describes hospital discharge planning and who is involved. It also has several useful tools that can be used to create a full plan for what happens after you or your family member leaves the hospital.

What Is Discharge Planning?
Family Caregiver Alliance National Center on Caregiving website
This article defines a discharge plan and discusses the role of the caregiver and other supports that are available at discharge.

Like everything else today, healthcare, too, is dependent on digital tools such as the Internet, and smartphone apps, in order to function efficiently and provide the capabilities you need as a patient to get the right assistance. This section includes detailed discussions about what digital tools are available for patients, how they are used and why they can be critical to full, comprehensive care management. 

What to Look for in a Patient Portal
Athena Health website
This site reviews the features of patient engagement, how the use of patient portals helps to achieve engagement, and what the portal should contain.

Personal health records and patient portals
Mayo Clinic website
This site explains the differences between personal health records, electronic health records, and patient portals, describing how the latter is a powerful tool for managing your health.

New Patient Engagement Guidelines Stress Electronic Tools
Information Week IT Network website
This site discusses the patient engagement framework and emphasizes the use of patient generated data ranging from symptom assessment and care experience surveys to shared decision-making.

Patient Engagement and Behavioral Insights – What People Want Is Health
New England Journal of Medicine Catalyst website
This article discusses the use of technology and creating feedback loops to keep patients doing what is good for their health.

How Patient Portals Are Increasing Engagement & Improving Outcomes
Healthcare Information and Management Systems Society (HIMSS) website
This brief article notes that the Cook County Health and Hospital Systems in Chicago was able to use their patient portal to help many patients with chronic conditions who struggled to keep up with their bloodwork and frequently missed appointments.

Get My Health Data
Get My Health Data website
This site shows how patients and their loved ones can get the information needed to better manage their health using online access and communication tools.

As a patient, one of your best sources of information about a specific health condition is other patients. This section provides information on how social media connects patients with each other and with clinicians, allowing them to discuss both common and rare health issues together in a community of similar needs for better outcomes.  

Social Media in Health Care: The Benefits, Challenges, and Opportunities
Hootsuite.com website
This site has a guide for health professionals on the use of social media in health care to promote awareness, encourage patient engagement, and increase the spread of accurate health messaging that patients might find interesting as well.

Rare Connect
Rare Connect.org website
This is an easy to use platform where rare disease patients, families, and patient organizations can develop online communities and conversations across continents and languages.

Mayo Clinic Connect
Mayo Clinic.org website
Mayo Clinic Connect is an online community where you can share your experiences and find support from people like you. You can also read Mayo Clinic expert blogs and take part in educational events.

Inspire: Health and Wellness Support Groups and Communities
Inspire.com website
A site for those with chronic health needs where you can join with many others who understand what you’re going through and are making important decisions about their health.

Patient Communities: A Started List
e-Patient Dave.com website
This site has a list of online communities for various conditions (e.g., Crohn’s Disease, diabetes, etc.)

Patients Like Me
PatientsLikeMe.com website
This digital health learning system uses the most advanced technologies to help you better understand wellness, aging, and disease.  You will gain access to information on different conditions, tools, information, and connections – to people like you.

Empowered Patient Chat
Patient Empowerment Network twitter site
Empowered Patient Chats are held on twitter bi-weekly. During the chat, patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.

The healthcare system is complex and it is important that you engage with the system. Hospitals and some physician groups have patient councils to help them consider new programs and address issues as they arise. How to engage with institutions and administrative programs, such as PFACs, is discussed in this series of articles and links.

A Patient and Family Advisory Council for Quality: Making Its Voice Heard at the Memorial Sloan Kettering Cancer Center
New England Journal of Medicine Catalyst website
This article describes why the Memorial Sloan Kettering Cancer Center (MSK) PFAC for Quality (PFACQ), has been so active and effective given that many PFACs become underused and undervalued over time.

Consumer Advancing Patient Safety
CAPS website
A consumer led collaboration has developed this guide to help patients, their families, and health professionals in primary care settings work together as partners to promote improvements in the safety and quality of care.

PATIENT ENGAGEMENT IN RESEARCH


Massachusetts Patient and Family Advisors Engagement in Research
Health Care for All website
This webpage discusses how PFACS and other patient, family, and community organizations can work with researchers to improve the results of research studies.

Patient Engagement Best Practices Resource Document
Brigham and Women’s Hospital website
The Patient-centered Comparative Effectiveness Research Center (PCERC) created this guide to how to implement the patient engagement process within patient-centered outcomes research (PCOR).

EXAMPLES OF EXISTING PFACS


Patient and Family Advisory Councils (PFACs)
The Health Care for All website
On this site you can read each Massachusetts hospital’s annual PFAC report.

Dana-Farber: Patient and Family Advisory Councils
Dana-Farber Cancer Institute website
This site describes the Patient and Family Advisory Councils (PFACs) at Dana-Farber. There are separate councils for adult care (Adult Patient and Family Advisory Council, or PFAC) and pediatric care (Pediatric Patient and Family Advisory Council, or PPFAC).

The Johns Hopkins Hospital: Patient and Family Advisory Council
The Johns Hopkins Medicine website
This webpage provides an overview of the Johns Hopkins Hospital PFAC.

New research indicates that patients with strong social supports and family engagement are more compliant in their chronic care self-management plans. 

IMPORTANCE OF CAREGIVING


Social and Emotional Support and its Implications for Health
National Library of Medicine National Institutes of Health website
This academic article summarizes recent research findings from selected publications focusing on links between social support and physical health.

Social Support for Health: An Increased Role in Health Care?
Peers for Progress.org website
This site discusses several articles that highlight a new understanding of the importance of social supports for good health and a need for a better defined role for social supports in the healthcare system.

Social Support: Taking Charge of Your Health & Wellbeing
University of Minnesota website
This page discusses the importance of social supports for good health outcomes and provides information on different forms of social support.

Health as a Family Affair
New England Journal of Medicine website
This article discusses the importance of family caregivers and both the pressures and rewards of being a family caregiver as well as the value of considering the family as a whole in clinical decisions and treatment plans for the patient.

GUIDANCE FOR CAREGIVERS


Social and Emotional Support and its Implications for Health
National Library of Medicine National Institutes of Health website
This academic article summarizes recent research findings from selected publications focusing on links between social support and physical health.

Social Support for Health: An Increased Role in Health Care?
Peers for Progress.org website
This site discusses several articles that highlight a new understanding of the importance of social supports for good health and a need for a better defined role for social supports in the healthcare system.

Social Support: Taking Charge of Your Health & Wellbeing
University of Minnesota website
This page discusses the importance of social supports for good health outcomes and provides information on different forms of social support.

Health as a Family Affair
New England Journal of Medicine website
This article discusses the importance of family caregivers and both the pressures and rewards of being a family caregiver as well as the value of considering the family as a whole in clinical decisions and treatment plans for the patient.

Saying Less and Doing More: How to Be a Friend to a Friend Who’s Sick Can Be Harder Than It Sounds
New York Times website
This article reviews a book by Letty Cottin Pogrebin, in which the author gives advice, based on personal experience and that of others, about how to truly be helpful to friends who have serious illnesses.

Today’s Caregiver
Caregiver.com website
This site has information, support, and guidance for family and professional caregivers.

Caregiver Support Articles
Next Avenue.org website
This site has a variety of caregiver support articles.

13 Secrets that Make Caregiving Easier
Agingcare.com website
This site provides information that can be helpful to caregivers as they struggle with their responsibilities every day.

How to Be a Great Caregiver
US News and World Report
An oncologist (cancer doctor) provides information in this article to help you be a good caregiver for someone with a chronic illness.

Family Caregiving –  Finding Caregiver Support and Making Caregiving More Rewarding 
HelpGuide.org website
This article details tips and organizations that can help families learn how to excel at family caregiving.

9 Mistakes Adult Siblings Make When Parents Are Aging, Sick, and Dying
US News and World Report
In this article, Francine Russo discusses transitions that occur when parents are aging, sick, and dying. She points out nine ways that adult siblings make mistakes when attempting to navigate this “new life crisis.”

Engaging Patients and Families: Vital, Rewarding, and Challenging
Engaging Patients.org website
This article describes a writer’s experience with the healthcare system after her 90-year-old father fell ill.

A Guide for Sharing Information about a Child’s Care
Massachusetts Child Health Quality Coalition website
This guide, Communication Matters, provides information that will help to ensure good communication among four pediatric care teams: 1) children, youth, and families; 2) primary care providers; 3) behavioral health providers; and 4) schools.

A Place for Mom
A Place for Mom website
This site has articles on accessing senior housing and getting resources for loved ones including those with dementia.

Caregiving at Home: A Guide to Community Resources
Family Caregiver Alliance website
This website gives information about the Family Caregiver Alliance, a community-based nonprofit organization that provides a public voice for caregivers, and gives information on care giving resources, supports, and advocacy.

What You Can Expect from Commonwealth Caregivers
Commonwealth Caregivers.com website
Commonwealth Caregivers is a private home care services organization in the Boston area, focused on providing customized care. This link shows a list of the services and supports provided by the organization.

Family Caregiving
AARP website
This site has the AARP comprehensive guide to family caregiving; with links to a detailed guide, tips, community and local resources, medical tips, explanations of legal procedures, and more.

Care Plans for Caregivers: The Secret to Confident Caregiving
Aging Care website
This site provides information that you, as a caregiver, can use to create a care giving plan that includes contingencies.

Help for Managing Multiple Medications
John Hopkins Medicine
This site provides separate modules of information including caregiving for seniors and managing multiple medications.

CAREGIVER RESPITE


Taking care of YOU
Family Caregiver Alliance website
This site discusses the importance of caring for yourself and what you can do as a caregiver to take care of yourself, noting that the person you care for will benefit, too.

Caregiver Burden: Help Carrying the Load
US News and World Report
This article discusses the importance of stepping aside to take a break and provides options to lighten the load.

Engagement solutions have been helping providers boost patient experience, improve the health of populations, and lower the cost of delivering care.

DEFINITIONS RELATED TO PATIENT ENGAGEMENT


Patient Engagement v Patient Experience
New England Journal of Medicine Catalyst website
Adrienne Boissy, a practicing neurologist and The Chief Experience Officer of Cleveland Clinic Health, differentiates and defines patient engagement and patient experience.

The Imperative to Promote Collaborative Consumer Engagement
Robert Wood Johnson Foundation website
The site links to an article in the American Journal of Managed Care that describes the lesson from the RWJF Aligning Forces for Quality initiative: achieving a meaningful definition and shared understanding of consumer engagement is a critical step to make care more efficient, affordable, effective, and patient-centered.

Improving Quality Health Care: The Role of Consumer Engagement (RWJF)
Robert Wood Johnson Foundation website
A RWJF issue brief on the role of consumer engagement in improving the quality of care that the U.S. health system delivers to patients.

STRATEGIES TO IMPROVE PATIENT ENGAGEMENT


Engaging Patients and Families in Their Health Care
Agency for Healthcare Research and Quality(AHRQ) website
To help you and your patients get the most out of your time together, AHRQ offers these free resources that you can use with your team and share with your patients.

5 Elements of a Successful Patient Engagement Strategy
Athena Health
This article discusses of elements of a successful patient engagement strategy.

Strategy 1: Working with Patients and Families as Advisors
Agency for Healthcare Research and Quality website
This resource is tested and evidence-based to help hospitals work as partners with patients and families.

What is Patient Engagement?
Healthcare Information and Management Systems Society (HIMSS) website
This webpage provides information around how to implement patient engagement strategies and how to optimize them.

Engaging Patients in their Health and Health Care (Empire BCBS)
Empire Blue Cross Blue Shield MA document
This document provides information on how to achieve patient engagement and the need for team members to know each patient as a “whole person.”

Patient and family engaged care – going beyond tactical buzzwords
Boston Medical Journal editorial
This editorial describes, in positive terms, the framework for building and sustaining patient and family engaged care.

Patient Engagement: Driving Behavior for Better Health
New England Journal of Medicine Catalyst website
A collection of original content on patient engagement from the NEJM Catalyst.

Blog – HealthWare Systems
HealthWare Systems blog
The article provides tips for managing online patient reviews while avoiding HIPAA (Health Insurance Portability and Accountability Act) violations to help you improve your online reputation and patient satisfaction.

Preparing for a Doctor’s Appointment: 6 Tips for Your Patients
HealthWare Systems blog
This blog post provides six tips for doctors to provide to their patients to prepare for a doctor’s appointment. Patient preparation for doctor’s appointments improves patient engagement, produces better health outcomes, saves doctors time, keeps appointments on schedule, and improves the revenue cycle.

Inside the patient journey: Three key touch points for consumer engagement strategies
Deloitte website
​This webpage provides three key touch points for consumer engagement strategies.

COMMUNICATIONS AND EDUCATION


Patient-Centered Care Starts With Patient-Provider Communication
Health Affairs blog
This blog asserts that improving communication between patients and their providers is crucial to better meet patients’ needs and improve patient outcomes. Recent data from the Health Reform Monitoring Survey (HRMS) demonstrates the need for more progress to be made in patient-provider communication and suggest strategies for improvement.

Nine Ways to Gather Great Patient Feedback
Physician’s Practice slideshow
This slideshow describes nine ways to gather patient feedback. Gathering and valuing patient feedback can help improve the quality of care physicians provide, and it can make physicians aware of changes they can make to improve their practices.

Using Patient Feedback
Picker Institute report
This guide is written for healthcare staff to help you to involve patients, staff, and the public in translating patient feedback into real improvements.

Patient Education Improves Diabetes Self-Management Outcome
Patient Engagement HIT website
This article indicates that self-management programs that include patient education and participant input are helpful in driving outcomes in chronic care management. It reviews data from a case study on diabetes care published in the American Journal of Managed Care.

PATIENT AND FAMILY ADVISORY COUNCILS (PFACs)


Forming a Patient and Family Advisory Council
American Medical Association’s Ed Hub website
This document describes 8 steps to form and get to work with your patient and family advisory council.

COST OF CARE


By Not Discussing Cost Issues, Doctors, Patients May Miss Chances To Lower Out-Of-Pocket Expenses
Kaiser Health News website
This webpage reviews a study published in Health Affairs that explores the ways that doctors communicate with patients that prevent real discussions of costs and can undermine a patient’s health.

HEALTH IT AND PATIENT ENGAGEMENT


Health IT PlayBook: Patient Engagement
The Office of the National Coordinator for Health Information Technology website
This website is a tool for healthcare providers, staff, administrators, and others who want to leverage health IT to engage patients in their health and care.

7 ways to improve patient access to medical record
Fierce Healthcare website
This article reviews seven ways provides can create patient-centered records, making it easier for patients to request and manage their own health data.

Digital Health Tools: How to Keep Patients Engaged
Rendia website
This article discusses steps to take to attract patients to patient portals or digital patient education programs and keep them actively engaged.

3 Ways Social Media in Healthcare can Improve Patient Engagement
Patient Engagement HIT website
This webpage reviews 3 ways social media in healthcare can improve patient engagement.

5 Ways Cleveland Clinical improved its Patient Engagement Strategies
Health IT News website
Authors of this article point to five key changes in how patients interact with the organization that have led to dramatic improvements in the patients’ experience.

HIMSS’ Health IT Pulse
Health IT Pulse website
This website provides up-to-date articles focused on improving health through information and technology.

Communication and Optimal Resolution (CANDOR) Toolkit
Agency for Healthcare Research and Quality website
The article describes the CANDOR process: a process that healthcare institutions and practitioners can use to respond in a timely, thorough, and just way when unexpected events cause patient harm.

This section provides links to comprehensive lists of common healthcare and health insurance terms, as well as medical acronyms. 

Health Speak: A Guide to Medical Acronyms
Massachusetts Health Quality Partners website
This acronym dictionary provides you with a short list of common abbreviations that healthcare professionals often use. As patients are given greater access to their electronic health records and even the physician’s notes in those records, it is critically important that these medical acronyms are completely transparent.

FH Glossary
Fair Health website
Found in Fair Health’s consumer website, this resource provides definitions and information on an array of medical terms.

Glossary of Health Insurance Terms
Medical Mutual website
This list defines many common healthcare insurance terms you might not know. Knowing these terms can help you choose a plan that meets your needs.