Do your research. These are three of my least favorite words because they're usually used when someone is trying to educate you by politely saying (in a way) you're misguided and you haven't done your research. Or put another way, I know more than you because I have done my research, whether the sources of such research are trustworthy or not.
I am personally a fan of supporting evidence, data, and facts but sometimes there aren't any or any you can believe. In the rare disease community, I can't tell you how many times I have seen these words, "Do Your Research". But how? In rare disease, there are topics that aren't formally studied, widely known, or well documented. When you're managing a rare disease, research is going to come up a lot. Whether you're working an issue with your doctor, talking to another parent or trying to make an agonizing decision research and data is going to be part of that conversation. It could be data you've collected yourself or data that's formally published.
Here's how we have dealt with researching a topic;
1.) Go to the conferences.
So much information is shared at gatherings of disease communities with patients, parents and experts all present. Organizational conferences, both global and regional. What do I mean? The National MPS Society's Conference, Global Gene's, and others, Can't attend in person? If they offer a streaming connection try to pop in, and certainly catch up with someone who attended the conference in person.
We have learned so much from the discussion, and much of it is not what was on the slides.
One example is we learned about more permanent ear tubes at one of the conferences, and were able to tell our Ear Nose and Throat (Otolarynologist) about this guidance to prevent repeated PE tube placements, and get a more viable long term solution in place for one of our sons.
Admittedly, I would like to go to all the conferences more often. I am crafting a strategy to get some help and send knowledgeable representatives on our behalf. We'll see if that works.
2) Ask questions of the experts
Do not be afraid to ask questions, speakers do not want to speak to a room of crickets. Many are interested in engaging with you. Don't be intimidated by jargon or the speaker's pedigree, if the speaker is intelligent and truly an expert, that person will be able to bring their information to anyone's level of understanding.
Just because they are experts doesn't mean they know everything either. It is my greatest pet peeve when impressionable people leave thinking what that person said is the end all be all, question the experts too...does what he said apply to my situation? Could he or she have some sort of bias in answering that question? Was that response based on fact or rooted in ego? Was that even an answer?
Believe me. I have heard it all. Experts think one thing or the other doesn't work, one is willing to try, another wants to see data, and most parents says it works. You have to take in the whole picture not just rely on one source.
Many times the experts don't even know. It's just one more element of data you can gather to help you become educated or gather the facts on your mission to a decision or to support what you need to do for your loved one.
My favorite, favorite day is when experts don't agree! I love, love, love it! It's like my birthday (and I am serious, not sarcastic)! The debate is interesting, thought provoking, always citing one study over another, challenging the typical way to think about something, and asserting a different position. I love it. Gives me more to think about.
3.) Troll (and not in a mean way) the research sites and publications
Despite what anyone tells you hit Google, hit everything looking for your key words.
There are countless sites out there with medical information. PubMed, Clinical Trials.gov, science magazines, Foreign Government Healthcare sites, etc. Experts, physicians, other parents, your disease community or national organization will tell you which sites they trust and don't or have resources themselves. Many times the pharmaceutical companies have studied the disease and have resources. Question them always though, always. Some materials I can't even use because they're so general they won't give the proper direction for the care of my sons, e.g. materials around education supports do not help for one of my sons, and would provide misguided information to the teacher. I have lined out, and edited documents to assist in his education. I bring research to IEP meetings to see what others think.
I have also used general research to support heading any direction. Regarding sensoneural hearing loss, I have provided research that was drawing a correlation between hearing loss and behavior. In short, I try to read the material and determine how it applies to our children or given situation. I make note of any questions, or irrelevant facts when putting it forward to assist someone else.
Experts also love to tell you when you've hit upon a trusted source, and they'll many times use what you've provided them. When you get someone to say, "ooo let me get that link or I am going to buy a copy of that!" You're on to something great then.
4.) Believe some social media posts but question the context
This is a source of information, absolutely. Take the pieces you can use from social media and question the others. There's a lot of brevity in social media, and all the facts can't be posted in a short blurb. You can learn a lot from engaging with others on social media but you'll really need to learn to tease out the nugget. Things that can be confusing are the context, here are some examples:
I say, "My son is doing really well, almost typical"
Someone who sees that doesn't understand the context of that post and may draw conclusions that it's one therapy, or treatment or it's a miracle, etc.
Another example, " I know that the bone marrow transplant is working." How does this person know that? Question the context. Was an MRI done? Is this parental intuition?
Another post: "My son is talking!" You don't know the facts around why or how and are only left to draw your own conclusions.
The things you can take away are follow up conversations, meeting the individual in person, or asking who or what helped them. Sometimes even the followup doesn't help but at least you tried to get at the root of the information that could help you.
Engaging in private rooms on social media, and in private conversations have been so beneficial where the facts and help really come out. The surgical information and expert guidance can be invaluable, and is that nugget that you've been searching for!
Best things I have ever received on social media are links to things, publications, people, experts, and tips. Twitter, Facebook, and LinkedIn dump a lot of information into my brain about links and publications.
5.) Engage Offline
Same guidance here. Meet in person, talk on the phone. I am a huge consumer of online information. I recently put a myChart message in questioning something and asked for a call because I wanted the chance to dialogue about any conclusions the other person may be forming about what I said in the message. Sometimes talking live is the best option.
6.) Admit what you don't know
This is hard for some, especially those who deem themselves experts. When my son did oxygen therapy, I admitted I didn't know if it was going to work. I documented pros and cons and admitted when I wasn't sure I could attribute the outcome to this or that. Including the unknown is par for the course, everyone is going to have to get comfortable with the unknown - to some this is called risk but it can be calculated risk. In action, the best experts admit that they could be wrong or what they don't know. This isn't a bad practice to adopt as a parent as well. Be authentic and put it out there.
7.) Talk to parents whose kids don't have the same rare disease as yours: cancer survivors, other people in the middle of or past another battle , or with those who have no battle at all
The most valuable information about ports have come from chemotherapy patients. The most valuable information about oxygen therapy has come from pediatric brain tumor patients and survivors. The most valuable information about PE tubes has come from parents of typical kids who have chronic ear infections. The most valuable information about IEPs has come from parents of kids with concussions or some sort of other injury or chronic illness. The most valuable diet information has come from breast cancer survivors and those living with MS. Caregiver guidance, from those caring for adults with cancer and Alzheimer disease.
Everyone is a resource, and they offer their unique position of distance from your rare disease. They may offer something you've never thought of before or even seen because you're too close to what's happening in your world.
8.) Call baloney (bullshit) and mean it. Everything has some sort of bias, and you have to look to eliminate it.
No matter what it is, once you have vetted the source, identified bias and have determined it's not legit ,eliminate the story, the study, the data or information from what you're considering to make your decision, support your case or guide you. Throw it out, trash it, don't look at it again.
A little harsh, maybe, but you don't have time to waste. I have been known to have this immediate reaction to something, and that's OK. Just say bullshit, out loud even.
Too good to be true? Your gut instinct is probably right.
Call in the expert opinion, ask for confirmation of your assessment. When we've really had tough decisions to make we've called upon an expert to give us a second opinion. I can't tell you how many times I am reciting my plan and conclusion to an expert, and the person says, "yes, ah ha, yes ah ha yes, that's it - right."
Never ignore data just because you don't like it, you still have to stare it down.
Many, many people have recommended this..thinking of that new hospital or doctor? Go there. I am constantly fed info from MPS I, Hurler Syndrome, parents who tell me who is good for what, and who has messed up what. We'll be going on location to another state or hospital based on their guidance to see it for ourselves for a very specific technique and service that has refined its technique for a surgery that most MPS kids need to have in their lifetime.
10.) Make your own decision
After you've done all your research, trust yourself. You're going to have to live with the decision. What does common sense tell you? Do you want to go with or bet against the data? Do you have sound reasoning to do so?
Don't vacillate on your decision. You've made it and there will be plenty more to make. Going back and forth and questioning yourself only undermines what you've done. Re-visit when new data is presented but don't undermine the decision you've made - you're just fine tuning your decision making engine. You're going to make mistakes but just make the best supported decision you can.
I know how hard these decisions are...you never know if you're doing the right thing but you choose a path and pursue it. We have had to decide the right time to pursue spinal surgery on very, very young children. I was 36 when that decision had to be made. We have had to decide between different treatment approaches each one carrying some form or risk, and the potential of morbidity. These are really hard decisions, and those decisions came when I was 34 & 36 with each child's diagnosis.
After all that, will you ever say to anyone, "Do Your Research" or maybe you just won't say that to me anymore, and I gladly thank you for that. Research is in the eye of the beholder especially when it's an "undocumented" topic. Many times the person who is saying that very statement has gone through a process to compile what has supported a decision they've made, this isn't uncommon and anything you can't do for yourself.
Lastly, don't let people always tell you, "oh we have to study that". Sometimes it's going to be a cold day in hell before a study ever kicks off on X topic, push back and say but here's what I have collected. If you can make a study happen, that would be very welcome, but until then I have to work on the data I have and do what's right.
Go forth and make the best decision you can because not making a decision is also a decision.
Be well,
Amy
