Posts tagged ‘advocate’

October 31, 2017

Technology as a Health Advocate

There are many ways to use technology as a health advocate! Being an informed patient can help you make better decisions regarding nutrition, fitness, disease prevention, disease management, and disease treatment.

DNA Analysis

My daughter-in-law was adopted from Korea. She arrived in the US without an extensive family medical history. When she learned she was expecting her first child, she and my son decided it could be beneficial to know more about her DNA. In addition to the battery of early screening tests offered by their doctor, they chose to have DNA analysis done by 23andMe®.
After some initial problems with FDA approval, 23andMe is now approved to offer DNA screening for genetic markers that may indicate a high risk for certain conditions. The list of approved tests include those for genetic variants that may make you more likely to have Celiac Disease (gluten intolerance), Age-Related Macular Degeneration, Alpha-1 Antitrypsin Deficiency (can lead to COPD or emphysema) , Hereditary Hemochromatosis (the body absorbs too much iron from the diet), Hereditary Thrombophilia (abnormality of blood coagulation that increases the risk of blood clots), Late-Onset Alzheimer’s Disease, and Parkinson’s Disease. A complete list of currently available tests is listed on the 23andMe website.

While this service is not intended for diagnosis of any disease, the results provide important knowledge that you can share with your physician. If this additional information lessens the time it takes to secure a diagnosis, it may increase the treatment options available to you. That’s more than worth the $199 price tag.

For that price, you’ll receive additional wellness reports for things such as lactose intolerance, muscle composition, deep sleep and genetic weight; and reports for traits like male hair loss, earwax type, earlobe type, and sweet taste preference. Also included are over 40 reports identifying whether you carry a variant gene for diseases such as Bloom Syndrome (short stature, higher cancer risk, genomic instability), Cystic Fibrosis, Sickle Cell Anemia, Hereditary Fructose Intolerance, and Glycogen Storage Disease Type lb (plus 35 more).

Research Participation

As a 23andMe customer, you can also choose to be a research participant. According to the website: “On average, a customer who chooses to opt into research contributes to over 230 studies on topics that range from Parkinson’s disease to lupus to asthma and more.” This participation has led to publication of 84 research papers since 2010.

Other research participation is facilitated by Apple’s ResearchKit app. For instance, you can participate in the Mount Sinai Asthma Health and Stanford Medicine MyHeart Counts large-scale
medical studies through this software. And the number of research and disease management apps is growing. Hopefully, the ease of using personal electronic devices to participate will increase the number of volunteers for research studies and give researchers an easy avenue for providing research results to participants – an often neglected follow-up.

Disease Management Apps

Health related phone apps reach far beyond research. There are disease management apps that focus on education and awareness, behavior tracking, medication reminders, community and networking. Visit any app store and you’ll find a long list of medical apps in addition to health and fitness apps. That’s great progress in making technology available as a health advocate.

In spite of such progress, obstacles remain. Last week while I sat through a meeting at the local teaching hospital, I was struck by how many times meeting participants were told that the hospital, med school, research institute, and clinic records are not integrated. The systems will not talk to each other. Information is not shared.

I had two thoughts – 1)This is horrible. Fixing that problem would save the staff time and improve user friendliness and patient care. 2)This could be a good thing. If all records were integrated there would be a huge increase in privacy and accuracy concerns. At least everything gets a 2nd look now because there’s no way to avoid it.

I’m sure I’m not alone in this mixed response. While I’m excited about the knowledge leaps we can make using technological tools, privacy and accuracy are legitimate concerns when using technology as a health advocate. At this specific moment in time, we must carefully weigh how much privacy risk we’re willing to take in order to move knowledge forward or make our healthcare easier.

Should I use the technology?

There are many reasons to embrace the integration of technology into our personal health plans. It can be a great health advocate. If I could have taken a genetic test to my doctor that showed I had a variant marker for Celiac Disease when I was attempting to get a diagnosis for whatever was causing me to break out with unbearably itchy rashes, have abdominal pain, weakness, fatigue, and achy joints, perhaps it would have improved my experience and lessened the time I continued to suffer. I also love the ease with which 23andMe customers can contribute to research. And I can see the benefit of using software to assist with a variety of aspects of disease management.

I suppose any decision regarding technology as a health advocate should be guided by the premise that knowledge is power. Before swabbing saliva or downloading an app, read the
privacy policy. Before participating in a study, ask lots of questions. But beyond that, apply self-knowledge and personal boundaries. If you know that you’re not likely to use a disease management app, don’t download it. Figure out another system that works better for you. If you’re not comfortable participating in research that tests drugs, choose other studies. It is possible to help advance medical knowledge without doing something that violates your boundaries.

For fun, you can let yourself be curious! After all, DNA testing can also help you locate long-lost or surprise relatives.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

December 30, 2015

Navigating Medical Care

mazeNavigating medical care can be an exhausting process as any celiac, IBS, Crohn’s, diabetic, or cardiac patient knows. As this year draws to a close, I’m looking forward to the renewal a new year promises.

I spent the past few days with my mom in a rehab facility. She is a dialysis patient and last week had 3 small strokes. On the phone from the ambulance as she was transported to the hospital, she sounded ok, but said her right arm and hand wouldn’t work right. Five days later, she arrived at a facility where she could receive physical therapy multiple times per day. It was Christmas eve.

Of course holiday staffing varies from the norm. On Christmas day, our nurse was in charge of 60 patients. There are 480 minutes in an 8 hour shift. That means, she could spend 8 minutes per patient even if she didn’t take a single break. We used more than 8 minutes of her time when my mom passed out in the wheelchair from low blood pressure. Needless to say, there is no time for the staff to make sure Mom eats or gets enough fluids.

My mom is lucky because at least one of us has been able to be there for a portion of every day. In spite of that, it has been difficult to get enough information together to assess whether a bad day is just a bad day, or the beginning of a downward trend. It’s hard to know whether we need to quit worrying about the food on the cafeteria tray and just get some Power Yogurt down her. We know she’s not getting enough protein to fend off infection for long. Unfortunately, our experience is not unusual.

I learned long ago when I had a rare parasite that caused recurring pneumonia that when you’re weak and in pain, you must have an advocate with you every step of the way or you can quickly be dismissed and become lost in the system. My lawyer boyfriend was with me when I was trying to get a referral to a large diagnostic clinic. He could barely contain his laughter watching me bite my lip when my pulmonologist said, “If you didn’t have an intelligent boyfriend here with you, I’d say this is all in your head.” And he wasn’t the first physician to say that during my two year ordeal.

I was young, healthy, went to the doctor promptly and still almost died with the first pneumonia after having been diagnosed with a bladder infection. I actually had psittacosis from Chlamydia psittaci which had become encapsulated in a recently capped tooth. This experience made me acutely aware that navigating medical care is best played as a team sport.

During that two years, I read all of my medical charts. This was also an eye opening exercise. The history recorded in the charts often wasn’t even remotely related to the history I gave. I realize my symptom group was unusual. Well, actually it wasn’t for someone with psittacosis, but it was unusual enough for one nurse to determine that I was just a bad historian.

At some point, most of us will need the expertise of the medical system. Without it, we do not have the depth of knowledge, necessary labs, sophisticated testing equipment, or access to medication that may be necessary to get us through a crisis and put us on a path to improving health. Is there anything we can do as patients to make sure we have the best chance of getting optimum results from medical care?

While nothing will guarantee a certain health outcome, here are 5 things you can do to facilitate a more positive journey in the healthcare system:

1. Choose a friend or family member you trust to act as your advocate in any major medical event.
The best advocates care about your well-being, can remain calm in a crisis, are good listeners, can process and prioritize information, are unafraid to ask questions, and will tell you the truth in a kind manner.

Be sure to identify your advocate as someone who has your permission to view healthcare information so that your care providers will not worry about a HIPAA violation.

journal2. Keep a daily journal of your condition.
Try to record facts without interpretation. For example, if you feel your energy level has significantly dropped, record how much sleep you get, when you get it, how many fluids you consume and what kind, what you are eating, how much and when, how much exercise you get, what kind, and when you get it, then note how tired you feel on a scale from 1 – 10.

Doing this every day will help you have a realistic picture of what is happening over time. It will also help identify areas in which a change in routine may help improve your symptoms. If you are too weak to do this, your advocate or caregivers can make notations for you and record their observations as well.

3. Be informed. Ask questions. Make decisions.
You are ultimately in charge of your healthcare. If you do not ask questions, you may be passively agreeing to treatment you would never actively choose. It can be helpful to think of yourself as pilot in command.

In an airplane, the pilot in command (PIC) is the person who makes the final decision about what will happen in an airplane. He can accept or refuse instructions from air traffic control and he is in responsible for all operations of the plane until he actively turns over command to another pilot by saying something like, “your plane or your aircraft”, and hearing “my plane” as a response. He then repeats, “your plane”. This is called a Positive Exchange of Controls.

If air traffic control says, “23 Charlie Tango cleared to land 22 left” it does not mean that the PIC must land the plane. He can request a different runway. If he is not cleared for the requested runway, he can initiate a go-around.

You are the pilot in command of your healthcare. You will receive lots of information from instruments and personnel. The more informed you are, the better the quality of questions you can ask and the better resulting decisions you can make. Your doctor is air traffic control. From his vantage point, he can see traffic and the runway better than you can, but he won’t know that you had a fuel leak and do not have enough glide distance to make the runway without input from you. You have the best odds of a safe landing when you work with your doctor as a team to identify alternative landing areas. Once determined, you decide the destination with which you feel most comfortable. You inform the doctor where you prefer to go from here, then you focus on the procedures that will result in your best chance to safely reach the landing area.

Just as it is common to think that air traffic control actually means the tower is in control, many patients do not recognize that they have the choice to request a plan that fits them. More typically, they defer to whatever initial plan the doctor proposes while they’re in her office and then fail to follow that plan once they get home and it doesn’t fit their lifestyle. This can be detrimental to any long-term progress.

4. Treat everyone kindly beginning with yourself.
When you have a chronic condition rather than a medical emergency, it can slowly eat away at your energy and attitude. A desire for relief may lead to impatience with medical staff. While you may feel justified in taking your frustration out on nurses, techs, or aides, doing so will not encourage them to treat you kindly.

The simplest way to prevent reaching the point at which you lash out is to recruit consistent, adequate social, emotional, psychological, and spiritual support. These needs are very individual, so a high level of self-awareness will be helpful in determining what and how much you need.

Incorporating a regular exercise, meditation, or yoga practice can strengthen your connection to internal resources. You may also find restoration in activities like gardening, cooking, writing, reading, fishing, walking, painting, woodworking, swimming, dancing, volunteering, or playing with your children or grandchildren.

flatbread5. Decrease the need for medical intervention.
You don’t have to worry about navigating the medical system when you’re healthy enough to only require routine check-ups or regular monitoring. In some cases, significant lifestyle changes can minimize the need for medical intervention. The effects of regularly eating a balanced diet of fresh foods, drinking plenty of water, getting adequate sleep and exercise, and filling our lives with passion and laughter should never be underestimated.

The new year is always a great time to wipe the slate clean and do things differently. I hope you’ll find these tips helpful the next time medical care is required.

As we approach the change to 2016, I wish you an abundance of health and hilarity!

Happy New Year!