Editorials

Patient and family engaged care—going beyond tactical buzzwords

BMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j1155 (Published 08 March 2017) Cite this as: BMJ 2017;356:j1155

An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage

“An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage”

LISA FREEMAN, Planetree International Patient-Family Advisory Council & Executive Director, Connecticut Center for Patient Safety

RICHARD ZORZA, Planetree International Patient-Family Advisory Council & Johns Hopkins Oncology Patient and Family Council

RICHARD HANKE, Ed.D., SPHR, Planetree International Patient-Family Advisory Council

JILL HARRISON, PhD., Director of Research, Planetree International

SARA GUASTELLO, Director of Knowledge Management, Planetree International

SUSAN FRAMPTON, PhD., President & CEO, Planetree International

Address correspondence to: Jill Harrison, PhD, Planetree, 130 Division Street Derby, Connecticut, 06418; USA. E-mail: jharrison@planetree.org

Rapid Response Letter to the Editor:

Recently, the National Academy of Medicine (NAM) asked a scientific advisory panel of experts to collect and summarize the evidence for patient and family engaged care (PFEC). As a result, a discussion paper is now publicly available with a comprehensive accounting of recent and reliable information to build support for PFEC all in one place. The paper includes a framework and logic model for PFEC, which describes specific changes and steps that healthcare organizations need for PFEC to truly flourish in process and practice.

In response to the framework, authors of an editorial in the BMJ urged industry leaders and patient-family partners to co-create a “to-do list” for PFEC that goes beyond buzzwords, like patient-centered care, to the heart of true partnership with patients and families.

In response to this charge, members of Planetree’s International patient-family advisory council decided that the first step in defining and accomplishing a “to-do list” for PFEC is to explain the concept of PFEC and distill the 38-page discussion paper into a consumer-friendly summary. We reasoned that while the industry rallies and organizes itself around the concept of PFEC, the average consumer doesn’t know what the term means and why it matters.

PFEC centers on the idea of partnering with consumers to “continuously integrate patient and family perspectives and involvement—at the point of care, in health care system design, and in defining outcomes that matter most.” To that end, we contend that a “to-do list” designed to build and sustain this partnership, should begin with an invitation to patients and families to engage.

What follows is an explanation of PFEC and an invitation to patients and families to engage in their healthcare written by consumers, for consumers. The letter is available for download here.

An Explanation of PFEC and an Invitation to Engage

Dear Patients & Families,

Recently, there has been a lot of discussion about how to make healthcare better for everyone. This includes patients, families, healthcare staff, and the big organizations and agencies that organize, provide, and pay for healthcare. Research strongly suggests that we can improve peoples’ health, their healthcare experience, and help healthcare staff enjoy their work more by involving patients and family members as equal partners in the process. That is, healthcare can only be improved if everyone works together. For many years, healthcare providers tried to make things better without asking patients and families what they thought or what mattered to them.

That way of doing things is changing.

The new way of doing things is called “Patient and Family Engaged Care.”

Whatever you call it, the basic idea is that healthcare professionals need to partner with patients and families to ensure that your care matches your values, preferences, and goals. This means that you need to have conversations with healthcare providers about what health means to you, what you value, what you like, what your goals are for your health, and what you need from them in order to live your healthiest life.
This idea of “Patient and Family Engaged Care” has become so important that the National Academy of Medicine recently asked a group of experts, called a scientific advisory panel, to collect and summarize the research evidence that demonstrates what a positive difference this approach makes. The great thing is that the information is now gathered all in one, easy-to-find, place. (It is called a “Framework for Patient and Family Engaged Care” and can be found here.) In this document, the group defined steps that healthcare organizations need to take to make sure that they are partnering with patients and families in their care.

The purpose of this letter, is to invite YOU, patients and family members, to engage in your healthcare. We have developed a list of suggestions for you to use in the ‘real world’ to make sure that patient and family engaged care happens every time you go to the doctor’s office, hospital, nursing home, or other healthcare setting.

Being an engaged member of your healthcare team can mean different things to different people. Some people will be more comfortable being engaged than others. It may feel different than what you are used to. The good news is that research shows that patient and family engaged care leads to better relationships between you and your healthcare providers. It helps keeps patients safe. It reduces healthcare costs and keeps people from being unnecessarily readmitted to the hospital. Patient and family engaged care makes healthcare staff feel more connected to the work they do, which makes for a better experience for everyone. The best way to see the benefits of patient and family engaged care is to try it for yourself. We’ve created a “to-do” list of suggestions for patients and family members on the next page. Try one, or try them all. You are an expert about you and an important member of your healthcare team. We invite you to engage with us in making healthcare better for everyone.

Ways to Engage:

• On your next visit to your healthcare provider, ask them if they have seen the framework for patient and family engaged care. If not, direct them here: https://nam.edu/pfec.
• Ask your healthcare provider if there is a way for you to be involved in improving care. For example, ask if they have a patient-family advisory council.
• Ask to be part of the organization’s leadership or government team. Ask if patients are included as board members, for example.
• Ask to be with your loved one at all times, if they want that. Question why there are restrictions to visiting patients. If having visitors is not beneficial to your healing process, enlist the support of your care team to set parameters for guests.
• Ask that a Care Partner or family member be present and engaged for all conversations about your health.
• Ask to be involved with your loved ones care, at all times, based on what you, and they, are most comfortable with.
• Invite a loved one to accompany you to appointments, procedures and consultations to provide support, but also an extra set of eyes and ears.
• Ask about your provider’s experience with your condition.
• State your feelings. They matter just as much as your physical condition.
• Get involved in research. Ask about how your condition is being studied and how you can help.
• Let your care team know how you like to receive information.
• Ask to see and contribute to your medical record. If you don’t understand what you read in your medical record, ask questions until you do.
• Tell your care provider what your health goals are – in your own terms (for instance, being able to walk up a flight of stairs, being able to play with your grandchildren without getting winded, etc.)
• Come to doctor’s appointments prepared. Bring a notepad with questions, your medication list and any other pertinent personal healthcare information.
• Create a medical biography about yourself. What conditions and medications have you had in the past? What are you currently experiencing? What are your goals for the future?
• Act like you belong. Be a teammate, not a subject.

Competing interests: No competing interests

20 July 2017
Jill S Harrison
Director of Research
LISA FREEMAN, Planetree International Patient-Family Advisory Council & Executive Director, Connecticut Center for Patient Safety RICHARD ZORZA, Planetree International Patient-Family Advisory Council & Johns Hopkins Oncology Patient and Family Council RICHARD HANKE, Ed.D., SPHR, Planetree International Patient-Family Advisory Council JILL HARRISON, PhD., Director of Research, Planetree International SARA GUASTELLO, Director of Knowledge Management, Planetree International SUSAN FRAMPTON, PhD., President & CEO, Planetree International
130 Division Street Derby, CT 06418 USA
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