As a nurse, two of my most important roles are as patient advocate and patient educator. Being an advocate means that I am supposed to “promote or support the interests of another,” and as an educator, I am to provide them with information. I have tried to advocate for and educate my patients in all of the nursing positions I’ve had, and now I am going to attempt this on a larger scale by encouraging every person reading this to use internet resources to do your own health-related research. I know most people are accustomed to having healthcare professionals tell them to avoid getting health information off of the internet, but I disagree with that and strongly encourage you to do the opposite.
The first definition of the word ‘research’ that pops up on Merriam-Webster’s website is “careful study that is done to find and report new knowledge about something.” During the time I’ve spent on the internet looking into (sometimes controversial) health topics, I have seen people completely dismiss information presented by another person because the person is not a scientist or doctor or other type of “expert” on the topic. Many times, the non-expert is a mother, like me, who has spent many hours searching for answers and help for her child, and is merely sharing the information she has found. According to every definition I have found of “research,” it does not require a special degree or level of education to do. In fact, in this Age of the Internet, the playing field has been leveled, and all of us have access to the same information as the “experts.” Even full journal articles that were once only available for a fee are now free to access through Sci-Hub, so there is virtually no published research that the average person with access to the internet can’t find. Here is a Beginners Guide to Scientific Research from Chris Kresser, which helps us non-experts understand what we are looking at in research papers.
So, yes, you should do your own internet research about your health. You should also seek out other people who are interested in similar health topics, and share information with each other. Whatever your health issue is, I guarantee you that there is at least one FB group or other forum on the internet with other people looking for help and answers just like you.
Here are some tips for researching health-related topics and finding communities online. I have come up with these tips based off of my own experience in researching health and wellness outside of the mainstream medical world.
**At this point I should reiterate the disclaimer that I am not providing specific medical advice, and as the drug commercials say: Before making any lifestyle or medication changes, talk to your doctor about whether or not they are right for you.**
1.Search for Facebook groups related to your health condition(s). If you are not on FB, create a profile that doesn’t have any personal information on it. Create a new email and use a fake name if you need to. Pick a nice landscape shot for your profile picture. The caveat here is that some groups will not accept you unless they can verify that you are a real person with an active profile and not a troll. So, you may have to add more information about yourself and get some “friends” in order to join. The point is that you don’t have to post anything to your wall or involve yourself in anything other than groups on FB. Once you are in a group, ask your questions and use the “search group” function to see if they have already been addressed. Nine times out of ten there is at least one other person in the group who has similar experiences to you and may even has answers for you. If you don’t find what you need in the first group, look for different ones. Some health practitioners such as Dr. Amy Yasko and Dr. Terry Wahls, have on-line forums outside of FB as well. If you are trying to decide on taking a new medication or having a procedure, I also recommend searching to see if there are any “victim” groups for it. If there are, join them and ask the people who feel that they were harmed more details to see if there’s a chance their experience could possibly be your own. Then of course, discuss these things with the professional who prescribed the medication to you. (It should go without saying, but I will say it: None of this applies to emergency situations. Go to the ER with emergencies, not to Facebook.)
2. Find and follow websites and public individuals who share information related to your health interests. I follow many medical doctors who use food as medicine on FB, for example. They post articles and blog posts that often have new research in them. You can “follow” them on FB, and the current setup is that you should click “See first” when you follow them so that their posts show up regularly on your newsfeed. Most big health personalities also have email newsletters available, if you prefer to stay away from FB. The newest way that the “alternative health” community is disseminating information from many experts at one time is via Summits. These are webinars that usually last about a week, and have presentations by or interviews with a few different experts available per day. Each Summit usually focuses on one health topic, such as anxiety, gut health, thyroid disease, etc.
3. Read the comments– This applies to everything you read on the internet. I cannot tell you how many times I have found better information in the comments section than I could in the actual article. Am I saying we should all believe everything people post in comments sections? Of course not. If you find something that piques your interest, research it further.
4. Be aware of and avoid astroturfing and trolls– If you haven’t already watched it, this Tedx talk by investigative journalist Sharyl Attkisson is a good brief description of astroturfing. From the video:
“ Astroturf seeks to manipulate you into changing your opinion by making it seem as if you’re an outlier-when you’re not.”
If you are researching a controversial topic that has big industry interests involved, such as vaccines or GMOs, you will definitely come across astroturfing and trolls. Being able to identify and dismiss them right away will assist you in getting closer to the truth about the subject you are researching. One example from my internet research experience is that every medical doctor or researcher that I follow who publicly states and stands by an opinion that challenges the pharmaceutical industry’s interests, no matter how much valid science they have behind them, will be “discredited” on Quackwatch or Skeptical Raptor or Scienceblogs. Most of the substance of those articles is attacking the character or qualifications of the person, not the substance of their argument.
5. Share the information with others– I would not have discovered the diet changes I needed to make for my son if a brave mom in the CMS group had not put herself out there and shared her story. Since she was reporting that she was recovering her son from autism, she got quite a bit of blow-back from some other group members. In addition to upsetting people, though, she also helped several of us find the direction we needed to go to get real help for our children. I will be forever grateful that she made herself vulnerable like that, and I know many others are as well. So, if you come upon information that ends up helping you or your loved one, please share it with others, even if you know it will upset some of them.
I do have to warn against going to the opposite extreme of blindly following mainstream medical advice: Pursuing “alternative” medicine without the guidance of a knowledgeable practitioner. Many alternative treatments have the potential to cause harm if not administered properly. There are trained practitioners in aromatherapy (essential oils), herbalism, homeopathy, and chiropractic for a reason: You can do them wrong. My intention in encouraging you to do internet research is not to get anyone to abandon working with knowledgeable health practitioners altogether.
The best way to use the internet is to find information about your health and figure out the direction or directions you want to go in pursuing wellness, then bring the information to your practitioner and work as a team to come up with a plan. Finding a community with the same interests and values as you, either online, in person, or both, is also very important. I talk to people every day who are not happy with the state of their health and their experiences in the healthcare system, and on top of it, they are dealing with it in isolation. If you do not have support from anybody in your offline life, get online and find your people! You are not the only person going through whatever it is you are going through, I promise.
Please comment below or send me a message if you have a resource to share or you are looking for a specific health resource, and share your tips for researching health topics.