Don’t miss Martine Ehrenclou on this Friday’s Empowered Patient Chat! The chat starts at 10:00 am Pacific on October 31st.
Martine Ehrenclou, M.A., is an award-winning author, patient advocate and speaker. Her newest book “The Take-Charge Patient: How You Can Get The Best Medical Care,” winner of 16 book awards, empowers readers to become proactive and effective participants in their own health care. Martine will be our guest on our Empowered Patient Chat tweet chat on October 31, 2014. Stephanie Gampper, Intake.Me’s VP Customer Insights, interviews Martine about her book, her own experience with our healthcare system, and her patient advocacy work.
Intake.Me: Martine, please tell us a little bit about your background and interest in patient-related issues.
Martine: I was a professional writer and public relations person for many years before my mom went into the hospital in 2001. She spent 5 months in the hospital and died there. Not long thereafter, my godmother Martha went into the hospital and spent 7 months there.
I learned a lot through these two experiences and became a proactive patient advocate. Terrible things were happening – misdiagnosis, wrong medications – and at first I didn’t know who to reach or how to reach for help.
For example, my godmother had a roommate in her step-down unit who had mental health issues and would stand over her bed at night yelling. Being a proactive advocate, I asked to have my godmother moved for her health and safety, and the staff there made that happen quickly. That change was made because I asked.
After these experiences, I interviewed 175 nurses, doctors, social workers, and families and wrote the book “Critical Conditions: The Essential Hospital Guide To Get Your Loved One Out Alive.” This book is intended to help family members and caregivers navigate the health system and prevent medical errors. 400,000 patients die every year due to preventable medical errors.
My second book “The Take-Charge Patient” is geared towards patients themselves. I interviewed over 200 medical professionals and patients for the book, and the book encourages patients to get navigation tools, ask questions, and get informed. I cover topics like getting copies of medical records, managing health insurance, and how to be a proactive patient.
Ironically, during the research phase of my second book, I was admitted to the hospital for a chronic pain condition. I endured 16 months of pain; 11 doctors and three alternative medicine practitioners became involved in my diagnosis and treatment, and I went through 15 procedures and tests. It was a nightmare, and I ended up living the chapters in my book in real life.
Intake.Me: How are you doing now?
Martine: Much better, thank you. I happened upon a newspaper article that described a woman’s similar experience and symptoms, and she happened to live in Los Angeles, too. That led me to the surgeon who diagnosed and cured me. I have been pain free for three and a half years now.
Intake.Me: How did you adjust your patient approach after your experience?
Martine: During the course of researching and writing both books, I stopped being a typical patient. I stopped being semi-passive and started being active and diplomatic. I needed to strike a careful balance and learn how to interact with nurses and doctors in a way where they would respect me.
For chronic pain patients like me, doctors often suspect pain medication abuse or an overly sensitive/complaining patient. In order to be taken seriously, I came prepared with a list of questions to doctor’s appointments, researched my condition, and even dressed in a suit.
I also became more organized and made an effort to partner with doctors and nurses. It is important to find medical professionals who are open to working with an empowered patient. As more emphasis is being placed on reimbursement and patient satisfaction, more and more doctors have to engage patients in this way.
Intake.Me: How should you let your doctor or nurse know you are an empowered patient?
Martine: There is no reason to state outright “I am an empowered patient.” That will probably put a doctor on the defensive. If you come prepared, treat the doctor with respect, and initiate a personal connection at the beginning of the visit, most doctors will quickly understand that you are an empowered patient.
It shows you are taking your condition seriously and are invested in your care. Be genuine; it’s not about being fake or getting the doctor to like you in a false way.
Intake.Me: What exactly is a patient advocate, and who can take on this role for a patient?
Martine: A patient advocate can also be a loved one who acts on behalf of the patient, ensuring their beliefs are considered and their wishes are being met. A professional patient advocate is a person who does it professionally for a fee or works for a nonprofit organization and does not charge the patient anything. A professional patient advocate often has an MD, RN, or certificate and advocates on behalf of the patient.
Note that an advocate is ideally a neutral party – not necessarily a spouse or partner – who is not emotionally attached to the patient. Sometimes close family members have trouble staying neutral and keeping the patient’s best interests top of mind.
Patient advocates ultimately focus on what the patient needs and wants, and they can:
Research diagnoses, physicians, and hospitals
Facilitate patient-provider communication
Record (with permission) conversations with doctors and nurses
Organize patient records
In a situation where a patient does not have someone who can be a full-time advocate, they can consider getting an advocate team. This could be three or four friends who rotate in and out of the hospital throughout the week, taking turns writing notes in one location that can be reviewed, shared, and added to by the other advocate team members. It is important not to miss key pieces of information.
Intake.Me: What are some of the most common challenges patients face when managing their health or the health of a loved one?
Martine: Trying to figure out your health insurance plan can be a challenge. Your plan contains complex information and terms that are not always clear. How much of a drug or procedure is covered? Is the anesthesiologist covered? Understand what your health insurance plan covers, what your copay or coinsurance is and what it means, and what your deductible is and what it means.
Another challenge is communication. Patients find it difficult to speak up and ask questions for a variety of reasons. Sometimes patients are afraid of potential conflict that could affect their care. However, it is critical for a patient to be well informed. For example, it is in a patient’s best interest to go into surgery with open eyes about things like complication risks and recovery time.
Lack of time is another challenging area. Physicians and other medical professionals don’t spend a lot of time with a patient during a visit. This time limit makes it harder for patients to ask questions. If a practice hospital is particularly busy, a patient might feel pressured to be quick. An overloaded nurse or doctor might be rushing to assess a patient’s symptoms and determine next steps before they move on to the next patient and repeat the process.
Intake.Me: It’s been 2 years since your book was published. What kind of feedback have you received from patients, their families, and medical professionals?
Martine: I focus on positive energy and empowering patients. I really do empathize with doctors and nurses as well as with patients, and the feedback I have received reflects this.
Doctors have been really happy with the book. Many like the idea of a prepared, well informed patient who is invested in their health and healthcare. It is incredibly frustrating for doctors when patients don’t take a medication or follow up after a test. Many doctors also like the communication strategies and points around the patient-provider relationship a lot. They agree that patients need to take responsibility for themselves.
There is some concern among doctors regarding how much more time it will take for a doctor to manage a proactive patient. There is a fine line between an empowered patient and one who brings in fringe information from a fringe website and wants to have an in-depth discussion about it.
Intake.Me: Let’s say someone has a new condition that will require them to interact much more frequently with the health care system and medical professionals going forward. What advice do you have for them?
Martine: I recommend that the patient creates his/her own patient toolkit. This way they can pull relevant and important information at a moment’s notice.
Step 1: Gather copies of your pertinent medical records, even if you are part of an EHR system. These records include blood work and scans such as MRIs and CT scans.
Step 2: Create a very brief medical history. List major surgeries, procedures, family history, and medical history. Keep it to half a page.
Step 3: Do research on your medical condition to get informed.
What does this condition mean for you and your future?
What kinds of doctors will you need to work with?
Have you received a second opinion to confirm diagnosis and hear more information?
Step 4: Create a list of questions every time you see a new doctor. Get ideas from other patients on chat sites and online communities. Find out which treatments and doctors have a good track record.
Step 5: Bring someone with you to medical appointments, regardless of how serious your diagnosis is. You want someone who is calm, supportive, and not anxious. This advocate does not have to be medically savvy; they just need to be a good communicator and a good listener.
Intake.Me: On a final note, one of my pet peeves at doctor’s offices is the wait time. Why are wait times so long sometimes?
Martine: It depends on the structure of the practice. If a doctor is part of a flexible practice, urgent patients can be fit into the regular schedule, resulting in a slowdown for non-urgent patients. Also, since the appointment cancellation rate for patients is quite high, many practices double-book patients to ensure at least one patient shows up for a particular time slot.
To connect with Martine and her patient advocacy work, visit her website at martineehrenclou.com and follow her on Twitter @Med_writer. Also, tweet-meet Martine Ehrenclou on our Empowered Patient Chat, October 31st at 10am PST / 1pm EST.