As we discussed in Part 1 of Managing Patients’ Records in an information system like Sharepoint (https://saarmrt.wordpress.com/2016/02/01/managing-patients-records-part-1/), it was pointed out that in the lifetime of a patient, a patient could have one or more physicians that specialize in their different healthcare needs. With so many healthcare professionals in the patient’s life, there should be a connection to all of them with the patient at the center. Without the connection, the patient will have difficulty effectively managing their healthcare. Through the following six steps, that one patient had to endure, other patients can be helped so that this patient and many others will know how healthy they are.
STEP 1 Define the management problem of records: Anne (name changed for anonymity) was a patient who had always had her yearly physical. Her doctors would tell her the same every year—that her clearance tests were bad and that she was spilling protein. Anne thought it was normal since the primary care physician did not tell her to see a specialist. After hearing the same news every year, she and her family worried more. Her family prompted her to find another primary care physician. The news would be the same every time she would meet with a new physician. More records were created but nothing was automatically sent from the other doctors that she had in the past.
STEP 2 NO COMMUNICATION CHANNEL MADE: Her past doctors would tell her not to worry because, although some people had higher clearance tests than she did, others had lower clearance tests and were still living. This was based on just records that they had on her and not from past doctors. There were no baselines for them to evaluate except from their own records.
STEP 3 HEALTH EDUCATION BY PATIENT: Finally, she found a primary care physician who connected Anne to an endocrinologist. The endocrinologist gave her the life threatening blow—her clearance tests were so bad that she needed to see a nephrologist. The endocrinologist told her that the situation was critical. Anne immediately went into panic mode and called a physician’s referral service at the local hospital. As she waited for her appointment, she read everything that she could about kidney disease. She went to the library and looked up books and articles that she could find. When she had gone to see the nephrologist, the nephrologist inundated her with brochures about kidney disease (including End Stage Renal Failure). Some of the pamphlets discussed special diets to restrict the patient to no more than 32 ounces of liquid in food and beverages. Anne found out that this type of diet (that also included avoiding certain types of food to eat) could slow the kidney failure and ease the patient’s pain and suffering.
STEP 4 FURTHER ANALYSIS OF PATIENT: Anne’s nephrologist gave her higher doses of blood pressure medicine. Her pressure was increasingly high. She was also placed on large doses of diuretics to reduce the swelling in her legs. Her legs were so heavy that it was difficult for her to walk long distances or climb stairs. Only current records, created by the current nephrologist, were referenced. Anne was only seeing the nephrologist and one day she fell out. She was conscious but felt like a disembodied head. Where was her body? She could talk to her family in the ambulance but she could not move her body or her limbs. Was this it for her? Her blood pressure was almost non-existent. The ER gave her an external pacemaker to stimulate her heart. Anne was also given medication to numb the pain of the pacemaker. The ER doctors performed heart, kidney, and blood tests on Anne. She was placed into intensive care. Anne and her family knew that she was critically ill. Anne’s kidneys could not eliminate the large doses of blood pressure and diuretic medications fast enough.
STEP 5 NEXT STEPS FOR THE PATIENT: The nephrologist decided to reduce all of Anne’s medications and supervise her diet. He operated on her for a graft placement for hemodialysis treatment.
STEP 6 LOST CONNECTIONS: Could this have been prevented if Anne had all of her medical records? She depended on her primary care physician to tell her when she needed a referral to specialists (endocrinologist and nephrologist) to help her manage her healthcare. A one-to-one relationship was lacking between patient and doctor. She did not review her records too. Patients, that I have informally observed, have had better results when they are proactive with their doctors about their healthcare. It is better to ask too many questions than too little. As Anne cared for her children and husband, she needed to care for herself with the same zeal. She is not at fault for her condition. She did not have the correct connections to her medical records to consistently review her clearance levels. She did not know the “red alert” number that would have made her ask her doctor more questions before her condition was critical.
The following are the missing teammates that would have helped her keep track of her health records and her condition through the demonstrated relationships:
Stay Tuned for Enter the Personal Health Records Librarian (when Managing Patients’ Records, Part 3).