Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.
AA•MDS has launched a map of specialists who are seeing new patients for treatment or consultation.
It’s important for patients to seek consultation with physicians who have experience working with bone marrow failure disease. They have developed an interactive map of physician specialists in bone marrow failure disease who have worked with them in a significant way as speakers, writers, editors, and/or advisors. This map will allow you to search for physicians in your area by location using the zoom-in feature, by zip code, or by disease area utilizing the dropdowns provided below.
- This list is not comprehensive and there may be specialists in your area who have not yet been included.
- Physicians may move to another institution for various reasons and may no longer be at the location noted on this map.
- The map will be updated as often as possible.
The Community Transportation Association estimates that approximately 3.6 million Americans miss or delay medical care because of transportation issues that cost the health care system $150 billion each year.
To help combat this issue, Uber has created a new app called Uber Health. Earlier this month Uber announced that they are working with providers to offer reliable rides for patients, care partners, and families to get to and from doctor’s appointments and the hospital.
The app will allow medical and administrative staff to either call an Uber to drive a specific patient home, or to dispatch an Uber to the patient’s house for pick up. The app also allows users to schedule the ride up to 30 days in advance, so important appointments are never missed. Planning transportation in advance enables patients to schedule rides to and from follow-up appointments even while they are still in the healthcare facility. With the ability to schedule and manage multiple rides from a single dashboard, healthcare professionals can take their level of care to the next level with Uber Health.
How It Works
Uber Health saves patients time and money, as they can focus their attention on their health instead of worrying about how they might get to their next appointment. With the help of Uber’s cost-saving methodology, patients and healthcare professionals can save money utilizing the app over hailing taxis or paying for expensive hospital parking.
Uber Health enables older patients and those with chronic pain gain independence and mobility. Because all communication with Uber Health is completed via text message, patients no longer need a smartphone and the corresponding Uber app to access Uber Health’s benefits.
The Uber Health dashboard was designed with HIPAA standards in mind, ensuring that all aspects of the service meet health care privacy and security standards.
As a part of Uber’s beta program, over 100 healthcare organizations in the U.S, including hospitals, clinics, rehab centers, senior care facilities, home care centers, and physical therapy centers are already using Uber Health.
For more information, please visit the Uber Health site: https://www.uberhealth.com
The ePatient virtual classrooms are designed to empower patients in all their healthcare matters.
ePatient101: How to be an Empowered Patient, is an online course for anyone interested in becoming an empowered patient, empowered caregiver, or patient advocate. Through this online course taught by Alex Barfuss, you will learn:
- The meaning of the term “ePatient”
- Why being an ePatient is so important in today’s healthcare system
- How you can save time and money and get better overall value from your health care providers
- How to advocate for yourself
- Tools, tips and best practices to help manage your or your loved one’s chronic disease
Caregiver 101 is full of useful tools for caregivers and taught by Caregiving.com founder, Denise Brown. By taking this course, you will learn:
- How the carer/caree relationship can be a health relationship
- How to find balance
- How to find more time for your self
- How to ask for support
- Tips, tools, and tactics to be a better carer/caree
- Curated links and resources
- Knowledge quizzes
- Support from a community of caregivers at cargiving.com
Chronic Lymphocytic Leukemia (CLL) 101
We are excited to be partnering up with Intake.me to bring you CLL 101. We wanted anyone struggling with a recent CLL diagnosis to become empowered through knowledge and support. By taking this course, you will receive:
- An overview of CLL
- Facts about CLL
- Curated links and resources
- Knowledge quizzes
- Printable checklists with questions to ask your doctor
- Why you should immediately get a second, expert opinion
- Tips on building your healthcare team, and how your local doctor can work with a CLL expert to provide the best treatment
- Where to find the latest CLL research, clinical trials, and other treatment options
- Ability to ask questions from other CLL 101 students
These courses are part of the Intake.me experience and are free to everyone. You can sign up be clicking one of the buttons below. Enjoy!
Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state. A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.
Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.
Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.
My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER, the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.
Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.
So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.
Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!