Planetree Tool to Explain and Invite Patient Partnering Published in BMJ

The BMJ has just published, as a response to a British Medical Journal editorial, An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage.

This short document, of which I am listed as a co-author, explains the concept of patient engaged care, describes and briefly summarizes the Planetree – National Academy of Medicine framework synthesis of the research into the impact of this approach, and perhaps most importantly, then specifically welcomes and invites patients to become engaged and partnering team members.  (Note that my blog, attempting to summarize the very rich and detailed original Planetree-NAM paper, into which I had some input, is here.)

The BMJ response includes our offered model “Dear Patients & Families” letter, which could be used by medical institutions to explain, welcome and support full engaged participation.

For example, it references and summarizes the research as follows:

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.

Some of its specific invitations  and suggestions to patients are as follows:

  • 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.
  • 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.

I think the last one, “Act like you belong. Be a teammate, not a subject,” sums the whole approach up perfectly.

I very much hope that medical institutions will want to include this letter in their intake, on-boarding process for new patients, and to encourage staff to use its suggestions as a framework for discussions with patients about a team approach and its specifics. It, together with the underlying NAM framework, could also be an excellent too for staff training at all levels on how not just to have an engagement discussion, but to make all discussions team discussions.

If this approach because a standard in most institutions, then we will truly be on the way way to a greatly improved system.

P.S. Working with Planetree on this has been a great honor and opportunity.

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A Patient Partnering Perspective From the London Tower Fire

A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:

As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.

He also noted:

.  .  .  A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children.  .  .  It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.

Sometimes presence and connection is the best, or even the only, healing.  And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them.  It is also not just about the individual “patient” but of the whole community and environment.  Thank you Dr. Kazmi.

 

 

New Hopkins YouTube Video, Patients on “What I Wish You Knew…Sharing Perspective from the Bedside,” Has Many Potential Uses

The new Hopkins video on the expectations of patients will be a powerful tool.  As the link says:

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?

As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are.  Respect, communication, and partnership.  Of course, the process of gathering these ideas was itself an important clarifying project.

It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff.  I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients.  Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.

We certainly spend time in waiting rooms, when we might be watching videos such as this.  Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.

Exploring the Best Phrases to Describe our Model Patient Relationship

As we start to think about reaching out to the public to educate and engage them in the transformation taking place in the involvement of patients and families in medical care, it is becoming more and more important to explore the different phrases that will best catch what we are trying to do, and that also resonate with the public.

In doing so, we must remember that we will start with a public that is massively on our side about these issues, so this is about all how to have that make a difference in the institutions we are trying to change, rather than to persuade them of the value of the approach.

As part of that process, I have found myself thinking about different phrases to describe the culture we are trying to create.  Without in any way disparaging any of the alternatives, I thought maybe these quick almost slogan might at least demonstrate why I like the “patient partnering” phrase.

Patient Centered — “You take care of me, trying to do what I need and want.”

Patient Engaged — “You let me talk about what I want and experience — and you listen.”

Patient Partnered — “You treat me as an equal member of the team, with each of us having different skills, knowledge and experiences, and the potential to contribute in different ways.”

It wold be very interesting to see how such phrases might fare in focus groups and polls.  (Some readers might be interested in what happened when somewhat similar research and analysis was done about how to address and change public views about access to the legal system, here labeled “legal aid”.  Follow the link here. I will say that one of the most fascinating experiences in life was watching behind the two way mirror, with notification, of course.)

 

NQF “Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care” Released

Today the National Quality Forum released its Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. As the announcement says:

NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the United States also provided input.

It is is a very rich document, with many insights and resources.  Rather than attempt to summarize it, I will instead list the lessons that I took from both the document and my participation as a patient voice in the process of bringing its ideas together.

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