Let’s say you wake up tomorrow with a terrible stomach ache. I’m sure it’s happened before. But this one is a little different. While the pain started in the middle of your stomach, right around the belly-button, it has since moved down to the lower right-hand side. Not only has the pain moved, but it is getting worse, especially when you move suddenly, walk, or cough. You feel like you have a slight fever and your back is starting to hurt.
What do you do? Well, you probably take the day off work for one thing. If the pain persists, you will also likely consult someone with your symptoms. Who that ‘someone’ is depends largely on your age and where you live. If you are my age – that is, in your 20’s or 30’s – and live in urban America, then your first ‘medical consultant’ probably goes by the name Google. A quick search for my symptoms yields some important and alarming information. One of the first search returns is from an online health encyclopedia run by CareFirst, the parent company of BlueCross and BlueShield. I read about the various conditions which can cause stomach pain: ulcers, irritable bowel syndrome, gallbladder disease, diverticulitis, and appendicitis. Most stomach pain, I learn, can be treated by simply resting at home. Acetaminophen can help relieve pain, but it is important to avoid aspirin, ibuprofen, alcohol, and caffeine. Unfortunately for me, my symptoms match those listed under appendicitis.
So, I do what any self-respecting globalist hipster would do: I look up appendicitis on Wikipedia. Here is the third sentence!!:
Untreated, mortality is high, mainly due to peritonitis and shock.
And then there is this, a picture of an acutely inflamed and enlarged appendix. Nasty. I will never eat sausage again.
I learn the causes of appendicitis, how it is diagnosed by doctors, how it is treated, and how most patients recover. Plus, I am pointed to lots of academic papers which got into more detail about all of the above.
The importance of access to health information is obvious: in the above scenario, it just saved my life.
As it so happens, I’m not the only self-respecting globalist hipster here at Rockefeller’s Making the eHealth Connection conference. Yesterday one of the participants of the Access to Health Information and Knowledge Sharing meeting shared two anecdotes as a way of emphasizing the variety of ways that patients come into contact with information regarding their health. While living in Mexico City her mother was diagnosed with diabetes and the first place she went for more information was Wikipedia. It turns out there are three main forms of diabetes, each with different causes, but that all three are ultimately due to the “beta cells” of the pancreas being unable to produce sufficient insulin to prevent abnormally high levels of blood sugar. What this young woman surely wanted to find out is how diabetes will affect her mother’s health, and what can be done to minimize it. Furthermore, because Type 1 diabetes risk is known to depend upon a genetic predisposition, it is important for her to read about prevention studies. Wikipedia was the first place she thought to look.
The second anecdote was also based in Latin America, this time in the Amazon Rainforest. She was in a rural village, hours if not days from the nearest hospital, when she was overcome by a terrible stomach pain. There was no Wikipedia, but there was a local health practitioner, an elder woman who rubbed a locally made salve on her stomach and told her to rest lying down. Within 24 hours the intense pain had completely subsided.
It is the latter of the two anecdotes which represents how the majority of the world’s population still finds information about their health symptoms. Let’s say, for example, that you are one of the nearly one million residents of Lilongwe, Malawi and your language is Chichewa. You aren’t going to find any information about health among the 46 articles on the Chichewa version of Wikipedia. (If you are a Chichewa speaker, like my friend Victor, you can be the first person to author the Wikipedia page on HIV.)
In fact, if you are a Chichewa speaker in Lilongwe and you encounter information about health in your native language, it’s likely that you heard it on a radio soap opera produced by the Population Media Center that was loosely based around HIV prevention. But if you have stomach pain that started around your belly button and then moved down to the lower right-hand side of your stomach, you have little guidance as to whether you should take some acetaminophen and wait out the pain or stand in line at your local hospital.
Deaths caused by appendicitis also have a significant impact on local economies as most victims are in their early 30’s, which is when they contribute the most to the workforce economy.
There is little doubt that the internet is changing the face of healthcare, but this change has occurred overwhelmingly in the developed world. What about developing countries? How can they take advantage of online tools to provide better access to quality health information for their citizens? Can they learn from the mistakes made by developed countries in the 90’s to ‘leapfrog‘ to the best practices of today?
In a study commissioned by Rockefeller for this conference, Naina Pandita and Sukhdev Singh from India’s Ministry of Communications & IT identify nine barriers to “Equitable Access to Quality Health Information with Emphasis On Developing Countries.” The document is a starting point for this week’s conversations around access to health information in the developing world. By the end of the week participants will further refine and analyze these barriers and come up with a roadmap of recommendations and actions to help break down the barriers worldwide.
My job will be to continue to transmit those discussions to the outside world. If you have any comments, suggestions, or questions for the authors of the study on barriers to access, please leave them below or use the contact form and I will make sure they are heard.
Thanks for giving updates on the conference. Heaps of valuable info.
I was wondering if PIH folks from Haiti are over there. One of the information manager of PIH, Sarah M., has expressed interest in having her HIV+ community start a blog. I see that some Hoosiers are present as well (Regenstrief Institute).
Access to medical information on sites like Wikipedia, WebMD, etc. is a double edged sword:
On the one hand, making educated decisions about one’s health is of utmost importance – having more resources is always better than having fewer (given that the resources are providing accurate information). When access to medical treatment is hard to come by, having information like this is tremendous.
At the same time, I think that we need to be wary of suggesting to people that they can self-diagnose over the internet. I watched a friend of mine put off getting a broken bone set because she found information on a website suggesting that a trip to the doctor was not necessary.
No one from Haiti unfortunately. Good representation from Brazil, the Southern Cone, and Mexico, but the Caribbean is sorely missed.
You bring up a lot of the issues that have been discussed so far: accuracy, trust, and users’ ability to find the right information. In my opinion what’s key is that patients and doctors both have access to the same information. Of course, a doctor’s training will mean that he or she is better able to interpret and apply that information, but the access should still be there. Out of curiosity, do you know what website informed your friend that she didn’t need to see a doctor about a broken bone? That is a very strange recommendation.
As I recall, the website didn’t tell her not to go to the doctor with a broken bone, but that she didn’t have a broken bone at all. She did end up going, however.
I agree that everyone should have access to the information. A doctor’s training does not just make them better at interpreting the information, it makes them better at collecting it – the are equipped to test, identify, and collect information from a patient’s body, albeit sometimes with more or less success. Maybe the idea of a breast/testicle self-exam should be generalized to overall health – teach people to give themselves a proto-physical and to identify problem signs in a more systematic manner.
I have concern about individuals having access to their official medical information. Most individuals are not educate to understand the information contained in their medical records. I personally believe people need to keep a self-maintained record of their health information which includes medication, surgeries, illnesses, radiology reports, hospital admissions, ER visits, family history, test reports, medical equipment, dental, eye glass prescriptions, allergies and much more. My husband and I maintain a personal medical organizer that contains all that information. We refer to our My Medical Assistant books when filling out medical questionnaires. There has seldom been an occasion the information we keep has not been sufficient. If more extensive reports are needed, the doctors can obtain them, but for most medical emergencies and routine offices visits, we have immediate access to the information requested. Since we are not relying on our memories, we also know it is accurate. This is our solution to medical records until more doctors and facilities are set up to use electronic records.
Must breast and testicle exams be self-exams?
I think that you and your husband probably use My Medical Assistant books to track your medical information because you developed the product, a detail you left out of your comment.