Patient Advocacy: Arranging Concierge Services

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A patient-advocate won’t let a patient feel like a medical statistic. He can make him feel like a special customer When Nisha Malhotra got diagnosed with brain cancer, she knew she needed to make a few urgent decisions and that she needed the help of a compassionate, knowledgeable patient-advocate. Abroad, retired general physicians often use their years of clinical experience and expertise to become patient-advocates in order to help patients like Nisha identify specialists, treatment protocols and facilities which are renowned for being world-class for treating her disease. Some mature into specialist patient-advocacy firms, taking on board former healthcare administrators and registered nurses. They function like mediators, helping connect patients with doctors and vice-versa. When required, they also negotiate with insurance companies on patients’ behalf. Although many patients are net savvy and can access most health-related information online, it still takes a lot of time to research your condition, find the best experts, and negotiate with insurance companies. In cases of rare or chronic illnesses, accessing these services poses an even greater challenge. Abroad, government-funded wellness programmes offer concierge services and provide patient coaching, resource mobilisation, rehabilitation and disease management. These services are generally customised to individual patients and their families, and continue long after the medical procedure is completed. A mother of two who works as a school teacher, Sangeeta Chuhan was finding it difficult scheduling a meeting with a paediatrician for her eight-year-old daughter. She was surprised how fast the appointment got made through a patient-advocate, in this case a friend of the paediatrician’s secretary. In India, since the practice is still evolving, you may not easily find such advocacy firms, but there are always people around you, who perform this role informally. These people can: Assist you in locating doctors, specialists, and treatment facilities locally and nationally. Help you organise your medical records, including current prescriptions, drug allergies, past surgical history, and other data. Draw up an individualised medical plan, based on the doctor’s medical advice, set medical goals and explain and help you adhere to the various treatment protocols. Avoid irrational drug combinations through diligent case management. Let’s face it – it’s not possible to receive good medical care unless you learn to effectively manage that care. Patient advocates can help you do that. In addition, they can: Schedule medical visits (physician appointments, lab visits, etc.), when they are due and send reminders to you. Accompany you, if no one else from your family is available. Take notes during the consultation and make a record of it, afterwards. Arrange for your transportation. Co-ordinate visits with allied health professionals, such as social workers, physical/occupational therapists, nursing home staff members etc. Make alternate living arrangements (e.g. assisted living facilities) for you, so that your dignity, independence, safety, and social life are not compromised by your illness. Given the vast number of hospitals and medical specialists who claim to deliver cutting edge care, it’s becoming impossible to manage and understand all the information flying around. Patient advocates sift and sort through this information, de-codify it and present it back to you in lay-friendly language. In this process they: Relay physicians’ diagnosis and lab results in a simplified language, devoid of all medical jargon. Sort your medical records and help in storing these in an orderly fashion. Co-ordinate crisis management and are available on a 24/7 platform. Keep family members informed of the patient’s progress. Health care advocates are trained professionals who are familiar with the ropes of the health care system. When Neeti Chandra’s husband got diagnosed with bladder cancer, she was in such a state of shock, that she did not know whom to contact or where to seek help from. The doctor had made his depressing pronouncement but thanks to the consultation offered by a second oncologist recommended by a friend, three years later, Neeti’s husband is hale and hearty and thankfully still keeps his bladder. Fortunately, this friend had a nursing background. She also had the right contacts. She made appointments, accompanied the couple to the hospital; explained their lab results and stood by them throughout the difficult period. She would even type out medical notes after each appointment with the oncologist, monitor the patient’s progress and obtain regular updates from the doctor’s team. Smita and her husband would have been completely lost without her. That’s the kind of invaluable help a patientadvocate can render.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients

The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

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