I recently got some advice on how to research medical conditions from a parent who has a wealth of experience in health care systems and researching illnesses.
David Prendergast is a senior researcher at Intel, although we work in different teams we share the same office. David has, unfortunately extensive knowledge of dealing with a child who has a serious medical condition. His daughter, Beth, suffered from a rare form of leukaemia. Unfortunately Beth passed away, but in the 9 months of Beth's illness David learnt an awful lot about researching medical conditions, and how to interact with doctors, he took the time out to share his tips with me, and I wanted to write them down and share them with everyone else here. I hope these few ideas and concepts will help other parents who, like us are facing the steep learning curve required to get up to speed on infantile spasms.
Tips on Research
When we first heard of Matties diagnosis Emma and I panic researched. We searched the internet for Infantile Spasms and randomly read articles we found. It is something that the doctors and nurses in the hospital had told us to avoid. It is easy to get confused or to read articles of questionable reliability, and Emma and I quickly found ourselves facing two questions:
1. Why isn't the information we're reading matching what the doctors are telling us?
2. How do I know what articles to trust and what to avoid?
Tip: Asymmetric Data Exchange
As you've probably noticed doctors generally don't appear to give you the whole story. Depending on the doctor in question it can often take us as parents, many questions before we get a sensible answer. This doesn't happen by accident. Medical professionals are often trained to behave in this way. This is called "Asymmetric Data Exchange" where we, as parents provide the doctor with all the information we know, in return the doctors provide us with only the little bit of information that they believe that we need to know. For a parent it can be incredibly frustrating. The doctors don't do this to be mean or to annoy us, they do it for a reason. Doctors have to speak to a wide range of people, for some people facts and figures help and make sense, but for others the same information can simply be very confusing, scary, and frightening. So doctors tend to err on the side of caution and only tell us what we need to know.
Warning: Not for everyone
These tips and tricks will help you discover all the facts and figures about infantile spasms, but first ask yourself if you really want to know? - some of the details and statistics can be concerning.
Tip: Keep notes
When researching you'll come across lots of information, so much so that you can easily confuse multiple points. Keeping good structured notes is the best way to help prevent this confusion. It also allows you to quickly look back and remind yourself of what you've found or to double check a point. David mentioned that it was very easy to think that you've read a fact, when in reality you're confusing two reports. This can cause all sorts of confusing when your speaking to doctors. Keeping good notes is important and will help you avoid this.
Tip: Understand the Condition
It is important not to skip the basics. Doctors apply the asymmetric data exchange principle. They may have explained the condition to you, but it is important to do your own independent reading on it too. Think of the following key questions when doing your own research:
1. How does the condition show its self?
2. What happens if the condition is not treated?
3. How is the condition diagnosed?
4. What causes the condition?
5. Are there any related conditions?
Tip: Knowing your Doctors
It is important to understand your doctors area of expertise, is this an area that they are good at, or have an interest in? Doing some reading about your doctor will help. Searching Google or Bing for your doctor's name and the name of the hospital will usually bring up some good information. When researching your doctor keep the following questions in mind:
1. Who is the doctor in charge of your child's treatment?
2. What is this doctor's background?
3. Have they published any papers on the topic themselves?
4. Where did they work previously?
Tip: Understand and Map the Treatment Plans
Treatment plans are structured methods of treating a patient for a condition. They provide doctors with a rough guide on how to address a condition. Treatment plans exist for a range of conditions, including Infantile Spasms.
The plans themselves are based on known research, and national guidance into the differing treatment options. They group the differing treatments into stages, a stage is often referred to as a “line”. The first stage, or “first line” will contain treatments which have been shown to be the most effective at controlling infantile spasms, with the least severe side effects. The second line will contain treatments which have not been as successful, or have worse side effects.
Research and national guidance differs around the world, consequently treatment plans differ from country to country. Understanding what treatment plans exist and what drugs are suggested will help when speaking to the doctor. It provides us as parents with information on alternative treatments which we can suggest. It also prepares you for the treatments which might come next, assuming the current treatment doesn't work. This is important as it ensures that we parents are prepared when the doctor starts suggesting changes to the medication.
I've started the process of mapping treatments for Infantile Spasms on a page on my personal blog. It's very rough at the moment, if you could provide information on what the treatment plan in your country is like, please do, and I'll add it to the treatment plan page.
Tip: Research Papers - Search for RCTs
By searching for research papers you may find treatments which are not listed on the treatment plans, or additional background information on the treatments which are listed. But how do you know what research is good, and what is bad? Randomised Controlled Trials (RCTs) are experiments which are run by medical researchers. In a typical RCT a patient will be randomly assigned to one of two groups, the first group will be a group receiving treatment, the second group will be a group who doesn't receive treatment. Typically, until the end of the trail the patient will not know which group they are in. If the treatment is a new drug, then both groups could receive a tablet. The tablet's will look identical, except only the patients in the first group will receive a tablet with a drug in it. The others, in the second group will receive a tablet with no drugs in it.
Medical researchers use RCTs because the human body has the ability to trick it's self into getting better. Patients who receive a tablet can believe that the tablet is helping them and can even make progress, when in reality the tablet is a dummy. What's happening is that the patient will believe that the tablet will make them better and it is actually this belief which is giving them the boost, not the tablet at all. This is often referred to as the placebo effect, RCTs account for this in their experimental structure.
Searching Google for "Infantile Spasms RCT" and "West syndrome RCT" turns up a lot of research papers.
Identifying Centres of Excellence
Researchers in any profession will pick niche areas to focus on. This will be reflected in the RCTs that are available, you'll find a lot associated with the same university or medical establishment.
How do you tell good research from poor? - look for citations. Good research papers will get "cited" (listed) in other research papers. As a very rough rule of thumb, the more citations the better the research.
Pick up the phone
If you find a bit of research which you think might help, but you've got a few questions about it - then pick up the phone. Each of the research papers will list the individuals who worked on it, and the organisation for which they work. David explained that most are happy to receive phone calls about their work. So pick up the phone and ring, David said that they often walk through their research again and can go through in a little more detail, or can explain in plain English what they discovered. I asked David "Don't they get upset receiving a lot of phone calls about this stuff?". David's response was sobering and enlightening, he simply said "Do you really care?".
Tip: Be wary of Wikipedia
This was counter intuitive for me, because when I'm looking for details on an IT question Wikipedia is fantastic (perhaps that is because it is mainly updated by geeks). Remember, that Wikipedia is a crowd sourced site and particularly when dealing with media information you should not to use it as your sole source of information, but should double check what you find using other sources.