By Casey QuinlanListen to author Casey Quinlan’s interview with Dr. Aniruddha Malpani on patient engagement.
Patient engagement and patient advocacy are hot topics in the American health care system, due to health care reform and enabled by ready access to digital health information now available to anyone with a smartphone. The role of patient advocate can fall to anyone from a friend or family member to a primary care practitioner, with shifting “qualifications” for that role depending on inclination, education, or dedication to the task.
But how do you find an effective patient advocate? How would you know if your doctor might be your best advocate, or if you should ask someone else to take up that mantle? Who teaches patient advocacy, anyway?
Dr. Aniruddha Malpani’s very accessible e-book seems the ideal textbook for anyone –professional or amateur – who wants to become an effective, educated patient advocate. That “anyone” includes family doctors, hospital administrators, caregivers, family and friends of any patient – literally any person with an interest in regaining or retaining best-possible health status for themselves or their families.
The e-book walks the reader through a step-by-step education: what patient advocacy is, how to advocate in various care settings, what to do when things go wrong with care, how to manage the care continuum, even how to become a professional patient advocate. Each section wraps up with a quiz that recaps the information shared, and prepares the reader for the material in the next section.
The language is accessible, presented in easy-to-digest chunks, and, in the opinion of this experienced health care wrangler, the ideal textbook for both the practiced and new-to-the-game patient advocate.
In the first section, the book lays out an understanding of what a patient’s rights are across the health care continuum. Those include the right to respect as well as privacy, full disclosure of all diagnoses and treatment options in language the patient can understand, the need for cultural competency on the clinical-team side, and the advocate’s role in health care delivery.
I was particularly impressed with the first section’s treatment of the issue of patient’s rights in clinical trials. Given that India has become a test bed for global pharma research, the recommendations are timely, as well as a great primer for any patient considering participation in a clinical trial, in India or anywhere else.
The responsibilities of the patient advocate, and how to be your own patient advocate, are covered in the second and third sections of the book. How to share bad news, one of the central conundrums of health care, is covered in a way that would help anyone involved in care: medical residents, practiced physicians, family members, health care system administrators, and patient advocates. There is a very thoughtful discussion of the definition of death, and the challenges that varying definitions present when end-of-life decisions need to be made. This section should be read by anyone with an interest in end-of-life issues.
The book’s examination of advocacy and experience in the hospital tackles one of the sticky issues in patient advocacy: Whose advocate are you, anyway? Hospital systems recognize the need for patient advocates, and many have added professional patient advocates to their staffs. When an advocate is employed by the hospital, how would a patient or his/her family know they could trust that advocate to have the patient’s, not the facility’s, best interests at heart?
The message in the book is clear: Advocates, no matter who’s paying them, must act only on behalf of the patient and that patient’s care. The advantage presented by hospital-staff advocates would be a thorough knowledge of the hospital’s resources, which would put all those resources in place for the patients that advocate works with. Advocates who operate independently must stay on top of the resource array at each of the facilities where the patients they work with are treated, which means the savvy patient advocate needs to be a skilled networker and a fast learner.
Dr. Malpani sees the family physician as the first and best line of advocacy for patients. In my conversation with him in preparation for writing this review, he used the phrase “emotional income” when I asked about the challenges presented to primary care doctors across the globe. Dr. Malpani believes that doctors need to not only pay attention to their fiscal bottom line, but also the emotional bottom line of their work, and that of their patients.
“Patient Advocacy: Giving Voice to Patients” is a primer for anyone interested in improving health care from the ground up. Perhaps even required reading for medical students, hospital management, health policy wonks, and health insurance executives?
Casey Quinlan wears two hats in health care: she’s a passionate advocate for the e-patient movement, and a hospital-medicine journalist who produces a monthly podcast series for The Hospitalist magazine. She has spent many years in the journalism trade, working for the whole alphabet soup of broadcasting: NBC, ABC, CBS, CNN, BBC, and others, as a field producer, covering stories for morning shows, documentary series, presidential campaigns, wars, presidential campaigns that turned into wars, the NFL, the NBA, and Stanley Cup Hockey. After covering her share of medical stories, Casey found herself managing her parents’ medical care in the last two years of their lives, and then getting a breast cancer diagnosis five days before Christmas in 2007. She wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of being your own patient advocate. Casey was named an ePatient Scholar for Stanford’s MedicineX in 2013, and is a contributing editor of the Society for Participatory Medicine’s e-patients.net blog. Contact her at firstname.lastname@example.org and follow her on Twitter @mightycasey.