HOW TO ADVOCATE FOR YOURSELF OR A FAMILY MEMBER:
Raymond Rupert MD. MBA. founder/medical director
Rupert Case Management Inc.
This is the start of a series of articles teaching patients how to advocate for themselves or for a family member. Advocacy is about understanding patient rights, about navigating a very complex system and about successfully accessing appropriate healthcare services to ensure a good outcome. Here goes.
IMPORTANT ADVICE ABOUT YOUR MEDICAL RECORDS:
It is important for complex patients to have a binder with their most recent health records, just in case they need to go to an emergency department or to a new doctor. The colour green has been our arbitrary choice of colours for these binders over twenty years.
It is important to keep adding new medical records to your binder. Not too many but just the most important medical records. Put the most recent records up front and the older records to follow. Include the key consultant’s reports, the most recent labs and any relevant imaging studies.
The records should not be more than one inch think. Any thicker than one inch and the doctors will be hesitant to dig in. Do not include an exhaustive search through google with many pages included. That’s a deal break with doctors. You can use the google search to generate up to 4 informed questions. That’s OK.
The first page of your binder should be your clinical summary on one page with a chronology. This should list important events, procedures, treatments in reverse chronology from most recent to past events.
The binder should include a copy of a heart patient’s electro-cardiogram and the results of an angiogram or interventional procedure such as a stent placement.
Doctors have a very short attention span, so if you give them the clinical summary right up front, then you will have their attention. Don’t include too many tangential issues which might be distracting. Just include the big bad things so that you are an interesting and focused case. Describe too many unrelated conditions and the doctor might “leave the building”.
Don’t tell the doctor that you are disappointed by your other doctors. Also don’t brag about how bright your other doctors might be. You want to stay very neutral with your new doctor. You respect the doctor and value his/her time, suggestions and advice.
Medical records are handled differently around the world. In Poland, for example, children are given a blank paper notebook at birth. Each patient visit to a doctor resulted in entries to the notebook. In effect, Polish patients had a portable record that went with them to all their doctor visits. This system worked well for many years. Our green binder replicates this system.
Hospital systems do not communicate, so the Polish system or the green binder is an important technique for patients to ensure that the doctors can quickly understand the patient narrative. This also prevents the doctors from making snap judgements and inaccurate assumptions about the patient.
These assumptions can stop investigations or treatments and be a threat to the continuity of care. The green binder keeps the doctor focused on the facts and on the evidence. It provides the patient with the opportunity for a mutually rewarding doctor-patient relationship.
Remember- Dr. Rupert’s advice is to keep your green binder up to date, just in case you need to interact with the healthcare system. No records and you are at risk of being misunderstood and possibly mistreated.
Mr A.M. was a 62 year old male with a painful left sided flank. The pain had been severe and had been there for about one year. He had had many investigations with no outcomes and no clear diagnosis or treatment plan. Rupert Case Management was asked by the patient to assist.
The first thing that we did was to aggregate his health records. We removed his many pages of google searches. We were able to focus the records around the key issue: his flank pain. We identified an expert who had published on how to treat his pain syndrome. In order to get that relationship off to a good start, we created his “green” binder.
The doctor opened it up to find the clinical summary and the supporting records. The doctor felt confident with this case from the start. The doctor got engaged in the case and recommended a treatment plan that made sense. You can see the role that the green binder played in helping to engage the doctor and to involve the patient in a process that resulted in an effective treatment of his problems.