Note: This is an access to just version of a recent post on my Patient Partnering Site.
A recently published tool intended to be used by medical institutions to encourage their patients to think of themselves as members of a care team, rather than “subjects,” has the potential to help ATJ organizations rethink their relationship to their clients. It may be hard for lawyers to think of this as a problem, because after all, we are obliged to put our clients first, but that rarely extends beyond individual case litigation, and even at that level nuance is often lost.
The tool, which has been published, by the British Medical Jounral as a response to an editorial, is called 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 proud to be listed listed as a co-author, explains the concept of patient engaged care, describes and briefly summarizes a synthesis of the research into the impact of this approach performed by the National Academy of Medicine and Planetree.
Perhaps most importantly, then tool 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, the invitation 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.
Below is a list of some of the tools specific invitations and suggestions are below. As you read them, think about whether we in access to just are in the position to make any similar suggestions and invitations, and if not, if there is a good reason for that.
- 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.
In the original blog, I expressed the hope that medical institutions would want to include this letter in their intake, on-boarding process for new patients, and wold encourage staff to use its suggestions as a framework for discussions with patients about a team approach and its specifics. I pointed out that, together with the underlying NAM framework, it 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.
I would make a parallel plea for access to justice institutions. In particular such an approach would help institutions focus on how and whether they are empowering the client or customer voice, whether at the individual or case level. The same qquestions are appropriate for advocacy, service, and Judaical institutions.