2 posts tagged “appointment”

How to prepare for a doctor’s appointment: 7 tips from member Cathy

Posted June 8th, 2018 by

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her 7 tips for getting the answers she needs.

In 1986 I noticed something was awry when my legs were completely numb, my arms were weak, and I was always physically exhausted. I felt scared, isolated and confused. I scheduled an appointment with my internist who referred me to a neurologist. After a spinal tap and CT scan the tests were conclusive. I had multiple sclerosis.

I was happy to have a name for what I had but that didn’t diminish my confusion. I decided my neurologist would lighten my emotional load at my next appointment and, like Scarlett O’Hara, I’d think about it all another day. In hindsight I realize this was not a good plan.

Learning how to self-advocate

One of the most important lessons I learned over the last three decades is you must always advocate for your health instead of letting others do it for you. Self-advocacy must be our number one priority. In today’s health care climate, when doctors are often inundated and pressed for time, it’s crucial to get answers to our questions during the thirty minutes or so of medical appointments.

As Megan Weigel, a Doctor of Nursing and the president of the International Organization of Multiple Sclerosis Nurses explains:

“The advice I give about preparing for a doctor’s appointment is to think about your goals for the visit and consider that your healthcare provider may have different goals. For example, you may want to talk about your top three most bothersome symptoms, and your provider may need to talk about labs…or other tests that you need. I usually tell patients to have a list of questions that they want to ask or topics that they want to discuss. I also tell them to come prepared to take notes…and to ask for what you need, including written instructions or what to follow up on in the office.”

Preparing for your next doctor’s appointment:

To avoid feeling anxious, overwhelmed or worried about doctor appointments I created a list of reminders I use so I will be fully prepared for my next visit:

  • Organize your medical history by having copies of medical records, x-rays, scans or other lab tests and the names/phone numbers of previous doctors. You can have these sent directly to your doctor from your previous doctor (you will first need to sign a consent form) either before your appointment or bring them with you.
  • Keep a journal of your symptoms. It does’t need to be elaborate, just a word or two to help you remember.
  • Bring a list of questions with you. I keep a piece of paper on my nightstand to write down questions and concerns I have. Do not leave your appointment until everything on your list is addressed.
  • Ask a family member or friend to come with you to help explain your symptoms, or to be a good listener and take notes.
  • Be specific about your symptoms, how they affect you and when they happen.
  • Bring a list of any medications and supplements you are taking including dosage and inform the doctor of any allergic reactions to medications.
  • Request a brief verbal summary and follow-up instructions to review what was discussed. If you’re nervous or need extra time to process information this review can be particularly helpful.

Remember that you and your doctor are managing your health as a team. The more prepared you are for your appointment the stronger your team will be!

How do you prepare for a doctor’s appointment? Anything you’d add to Cathy’s list? Join PatientsLikeMe to chime in and get more tips from the community.

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PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D

Posted May 18th, 2015 by

CAMBRIDGE, MA, May 18, 2015—PatientsLikeMe today announced it has appointed Jason Johnson, PhD, as Executive Vice President and head of research and development (R&D). Johnson leads the company’s research, data science, and informatics teams, which focus on analyzing and merging patient-reported and other data types to develop models of disease progression and generate new insights about disease, treatments, and health. Johnson reports directly to CEO Martin Coulter.

“Jason comes to us at a time when the industry is putting patients at the center of healthcare, and using more patient-reported data to guide business and operational decisions,” said Coulter. “Our research and informatics teams bring the data to life by extracting insight and meaning about the patient experience, and helping our partners see which medicines and therapeutic approaches will benefit patients the most. The combination of Jason’s leadership and our scientifically-validated data will be a powerful source of insight to guide discovery, development, and treatment decision making.”

A renowned computational biologist and information science strategist, Johnson comes to PatientsLikeMe after spending 14 years at Merck, most recently as Associate Vice President for Scientific Informatics. In this role, Jason helped build Merck’s informatics and analytics capabilities and was responsible for applied math and modeling, scientific computing and research software engineering. Johnson held various leadership roles during his tenure at Merck within R&D and information technology (IT), and led teams responsible for early clinical development and discovery research IT, computational biology, molecular profiling, and genomics research. Prior to joining Merck, Jason worked at Rosetta Inpharmatics, a biotechnology company in Seattle, and at Pfizer.

“PatientsLikeMe’s ability to bring patients together to share data and insights can transform the way healthcare is practiced and substantially increase value to patients,“ said Johnson. “I’m excited to be working on healthcare informatics from the perspective of the patient. I believe that amassing and analyzing relevant health and medical information from many people with similar experiences and patterns of data can deliver research insights that improve healthcare decision making and patient health.”

Johnson is the author of more than 35 peer-reviewed research publications. He holds bachelor’s degrees in physics and philosophy from Stanford University, a master’s degree in physics from the University of Cambridge in the United Kingdom, and a PhD in biophysics from Harvard University.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com