Managing Your Medical Team

In living with myositis for 20 years, Ms. Marianne Moyer has learned some techniques that have been useful for her in navigating the many complexities of the healthcare system – in particular, “Managing Your Medical Team.” Ms. Moyer stated that the objectives of this presentation were to:

1. Help myositis patients and their caregivers create and maintain the maximum amount of control in how they are treated by their medical team
2. Help patients record and maintain their medical records
3. Share best practices for interactive sessions with the medical team

Ms. Moyer is a past chairwoman and board member of The Myositis Association. She is founder and co-facilitator of The Southwest Florida Keep-In-Touch (KIT) group. Below is an adaptation of what Ms. Moyer presented to our group.

Appointments

Before your appointment

Ms. Moyer discussed being prepared for doctors’ appointments. She stressed the importance of doing as much as you can in advance. Write down notes on your current situation, questions that you have, and lab results and/or reports that you have from other providers you may have seen since your last visit. It can also be helpful to send any new lab reports to your doctor before your visit, so that less time is spent reviewing them during your appointment.

It is also helpful to have a “buddy” (such as a good friend or partner) with you – someone who might be able to help with questions and answers to supplement your own. It’s important to decide the role that you want your buddy to play in advance (establish ground rules). For example, discuss how much you want this person to intervene, who takes notes, and what to do if the doctor directs the discussion to your buddy more so than to you. It’s important for both of you to be flexible.

During your appointment

Ms. Moyer offered the following tips to help during the appointment:

• Avoid small talk. There can very little time during an appointment.
• Discuss your current concerns and questions.
• It is helpful for everyone present to have a printed copy of any questions you have brought with you. It is also helpful to have dates and to keep a log. You may be feeling relatively well on the day of your appointment, but that may not be an accurate picture of how you’ve been feeling since your last visit.
• You may have many questions, especially when your diagnosis is new. Try to limit questions to the most important ones. Ms. Moyer offered these examples:
  • When/how do we know the infusions are working?
  • Should the infusion schedule be changed?
  • What factors will determine my infusion schedule?
  • Can you help me to continue reducing prednisone?

At the end of your appointment

• Review notes you or your buddy have taken.
• Are they clear to you? Will you understand them later?
• Ask how the medical records of your visit/s will be available before leaving the office.
• Do you want a copy sent/faxed to you? Will you use the patient portal to access your medical records electronically?
• How can you get copies to other doctors?
• Consider taking pictures of new medications and medication schedule/s and notes. Are there any more questions that you or your buddy have?
• Ms. Moyer stated that it is important to for doctors to receive expressions of gratitude for their time and effort.

Between appointments

• Update your records in whatever manner you choose to keep them (this will be further discussed below).
• If using one, go the patient portal for a copy of your notes.
• How will your other doctors receive your updated information?
• Follow the instructions you were given!

Record Keeping

It is important to keep medical records in order to see and understand possible patterns of what has and hasn’t worked for you. This can also help you to communicate with your current medical team and future healthcare providers. You may want to consider taking them with you to all appointments.

Try to keep all your medical records in a way that is most convenient for you and that which you are most likely to use.

Technology has made it possible to connect to our medical information quickly. However, some people are more comfortable with writing things down. Ms. Moyer offered that she has found a 3-ring binder with tabs to work well for her. She suggested, first, to create an index and file the most recent information on top.

Suggested binder tabs include:

• Medications
• Test results (blood, EMG, CT, MRI, etc.)
• Notes from doctors’ visits (organize according to specialty)
• Optional sections can include expenses, tax issues, medical journal articles and warranties for medical equipment

Keeping a log

Ms. Moyer stated that keeping a log in addition to a binder can be a very useful tool for you to help communicate with your medical team. A log can be shorter and include:

• Dates of medical visits (can include infusion dates)
• Dates of tests and the reason for tests (for example, pulmonary function)

Communication among your medical team

An issue common for many is how to get your doctors to communicate with each other. Some will do this automatically if they are linked through the same electronic medical record system. Others may reach out through email.

To make sure that all your doctors are aware of your latest treatments, you may submit the records yourself. Sometimes, it’s possible to use a combination of methods. Ms. Moyer stressed the importance of having your medical team talk to one another. If it is not happening, Ms. Moyer stated that it may sometimes be necessary to look for a different doctor.

What you need to carry at all times

To ensure that you have your medical information available, especially in case of an emergency, Ms. Moyer suggested some tools that she has found to be helpful:

• An updated medication sheet that includes:
  • A list of medications with dosages and dates prescribed
  • Schedule of when taken during the day
  • Reason for taking
  • Prescribing doctor
  • Notes (which might contain reactions to medication)
• A separate list that includes:
  • Medications taken “as needed”
  • Over the counter medications
  • Supplements
• A list of medical team members that contains the following for each member:
  • Name, specialty or title
  • Address
  • E-mail/portal contact (with username and password)
  • Phone number, emergency cell, and fax number
  • Office hours
  • Your medical insurance information

Planning for the Future

Ms. Moyer stressed the importance of planning for your needs and wishes regarding medical care and treatment, as well as your financial assets. It is important to consider preparing:

• Wills
• Power of attorney
• Medical power of attorney*
• Advanced directives*
• Insurance policies with up-to-date beneficiaries

*All your doctors should have copies of these

Ms. Moyer ended her presentation by stating how challenging it can be to manage and coordinate all the aspects of your medical care when you have a chronic illness. It requires continual work. However, it can also provide a sense of control and empowerment over your own care and treatment. In essence, having some tools can help you be your own best advocate.

Learn more about the HSS Myositis Support Group, a free support and education group, held monthly, for people with myositis and their family and friends.

Posted: 7/10/2018

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Summary by Suzan Fischbein, LCSW, Senior Social Work Coordinator