TMS Wants You… To Be Health Literate

Oct 03, 2022

TMS Wants You… To Be Health Literate

In recognition of Health Literacy in October, TMS presents Health Literacy Series: Blog 1

Written by Shonna Snyder, Ph.D., CHES and Valerie M. Slee, RN, BSN

Because health literacy empowers people, TMS wants to encourage all patients this month to stretch their health literacy knowledge and skills.  By doing this you will be empowered.

Empowered to do what you might ask.

Empowered to make decisions about from whom to gain knowledge about mast cell disease.

Empowered to listen to doctors who have your best interest in mind and not theirs.

Empowered to purchase medicines, supplements, and health equipment that have been scientifically proven to help.

So, exactly what is health literacy?  The WHO defines health literacy as, the personal characteristics and social resources needed for individuals and communities to access, understand, appraise, and use information and services to make decisions about health. Health literacy includes the capacity to communicate, assert and enact these decisions.1”

At the end of the day, it’s about decision making.  TMS encourages all mast cell disease patients and their caregivers to make decisions that will improve their health and the health of others.  We offer five tips to help you make great decisions.

Tip 1: Ask, is their peer-reviewed science behind it?

Whether you are reading an article about mast cells, listening to a talk about mastocytosis, or looking at a product that is supposed to help your mast cell disease you need to stop and ask yourself, where is the science from?  Who conducted it?  Is anyone making money on this?

Products and information should undergo a rigorous peer review before you choose to purchase or use them.  Peer review means that a group of peers with the same qualifications and experience in the field have blindly reviewed the information or product and deemed it safe and appropriate and has gone through the appropriate scientific method of scrutiny.  If it has not been peer reviewed, don’t fall for it.  The other type of review that should happen on most products, especially medication, is the FDA approval.  If something being sold to you has not been through the FDA approval process, be wary of it, there is probably no science behind it.  The FDA uses rigorous scientific methods to ensure that a product you are using is safe.  And by the way, companies can put their products through a review by the FDA or other regulating bodies even if there are no rules saying they should.  This is a sign of a good company who believes in the science behind their product.  So, again, ask yourself, has this product had any reviews by the FDA or scientific peers?

Tip 2: Ask, who is gaining more?

There are a million products on the market that say they will improve your health.  Do they all?  No.  Some might, but most probably won’t.  So why are they even out there for you to try?  Because someone stands to gain.  In most cases it is money.  Sometimes it is power or fame or other notable things, but the bottom line, it probably isn’t your gain.  If you will not gain anything, again, be wary of what you are believing in or purchasing.

Tip 3: Don’t believe the hype.  The doctor.  The product.  The service.

Just because others believe it, doesn’t mean you should.  Just because others buy it, doesn’t mean you should.  Just because others see a certain doctor, doesn’t mean you should.  We encourage you to do your own research and not follow the crowd.

Things to consider about a doctor: Don’t go to a physician just because your friend likes them. Do your own research. Check credentials… more on that in our next blog. Ask, where did the physician or practitioner go to medical school? Where did they do a residency? Fellowship? How many years of experience have they had in a field relevant to the health problems you are experiencing? Are they associated with a well-renowned, major medical center or teaching hospital? Do they hold a teaching position there (usually they have a title called Instructor, Assistant Professor, Associate Professor or Professor, followed by the name of the University)? This information can be found on either their own practice website or on the hospital or university website.  With mast cell diseases, you want a specialist.  Someone who has the knowledge and skills to diagnose and treat your condition for the long haul.  Be wary of someone who does not have the specialty training and experience but claims to be a mast cell specialist.

Also, look to see how many publications they have, and whether they are in well-respected journals. You can Google the name of the journal and read about it to see if it is a good one to have an article published.  And remember Tip 1, is it peer reviewed?  In an example Google search for The New England Journal of Medicine, the following description is provided: The New England Journal of Medicine is a weekly medical journal published by the Massachusetts Medical Society. It is among the most prestigious peer-reviewed medical journals as well as the oldest continuously published one. Wikipedia. Another consideration, look at the other authors who collaborated in research with this physician. Are they well-known in their field? Are they also from well-respected major research/teaching centers?  Do they have research experience in mast cell diseases?  A good mast cell disease doctor has the training and experience to diagnose and treat you properly.

Things to consider about products: Don’t buy the first thing that is suggested to you, no matter who suggests it, UNLESS it is a doctor that meets the criteria above.  Most legitimate doctors are not trying to sell their book or supplement(s) directly to you.  Legitimate doctors and practitioners rely on the pharmaceutical and insurance companies to regulate the products that they ask you to purchase and use.  They also do not want you to spend your hard-earned money if you have an insurance policy that will cover the costs.  Additionally, they rely on outside retail venues to sell their books (e.g., Barnes & Nobel) if they have authored one, though most legitimate doctors are publishing in the scientific literature, not writing books.

Things to consider about services: Be wary of a service that says it will cure you or slow your symptoms down after one or two sessions.  For example, acupuncture, while useful for many things, is a service that has not been scientifically shown to influence mast cell disease.  If a doctor or practitioner is expecting you to do acupuncture or other type of service as part of their treatment plan, be skeptical.  There are many services being offered out there: red light therapy, massage, etc. that have had no scientific evidence of helpfulness on mast cell disease.  Don’t believe the hype.

Tip 4.  Learn your credentials.  **Our ENTIRE next blog will cover this tip in depth, but here’s an overview.**

Understanding the different titles and credentials of speakers or presenters can be challenging for patients and families who are looking at options for education and disease awareness, as well as finding the appropriate physician for mast cell diseases.  It is important that you find out what credentials a doctor or other health care provider has earned.  The key word here is earned.  A health care provider who takes a one credit hour class in mast cell diseases is not a specialist in mast cell diseases.  They have not earned that title.  You must ask about or research the letters behind your doctor or other health care provider’s name.  Again, next month, we will cover the many different credentials and provide you with information that will show you the difference between those how have earned a credential that makes them a mast cell disease specialist, those who are qualified to refer you to a mast cell disease specialist, and those who you should be wary of and probably not seek services from.

Tip 5: Don’t take it because it’s free.

Be aware of free giveaways that lure you to try a new product or participate in an event. Any scientifically sound product should be attractive based on the research done to validate it, and that research should be freely available for review. Often, good research is published in peer reviewed journals with well-known names. Be cautious of research self-published or published in more obscure journals.

Scientific conferences attract participants by the quality of their presentations, the credentials and reputation of the presenters. Be careful if free gifts are associated with attendance.  Anyone or any group can decide to have a conference.  It only takes renting a space for people to come or creating a Zoom link for people to watch.  This does not mean that the conference goals are based on sound science.  In fact, the opposite could be true.  The conference might ONLY be a way for the presenters to gather a large audience so they can sell their products.  Entrance to the conference is free, but the information that you are being persuaded into purchasing is not.

To sum it up, being health literate means that you can make good decisions for your and your family’s health.  Making good decisions is hard without accessing, understanding, appraising, and using information and services that have gone through your scrutiny and you have found to be valid.  Good luck out there!  We’ll see you next month with Health Literacy Series Blog 2: Know your credentials

References

  1. Dodson S, Good S, Osborne RH. Optimizing health literacy: improving health and reducing health inequities: a selection of information sheets from the health literacy toolkit for low and middle-income countries. New Delhi: World Health Organization, Regional Office for South-East Asia, 2015.