FOR THE PUBLIC
It takes 14 years (on average) to get something from the lab into the real world to help people like you, your friends, and family. We think that’s bonkers, don’t you?
Part of that slowdown is because people don’t have the info or access to health research studies—we’re all running races and hashtagging causes and raising money, but the big, huge, wild missing piece to combating diseases?
All of us participating in health research studies.
Some people never learn about health research opportunities that could help their friends, family, or themselves, and it can take years for study teams to find participants!
The Matchmaking Portal launching in spring 2020 is an easy-to-understand, mobile tool making it super simple to find and join the health research you care about most. It lets you use your spare time in a simple, concrete way to champion health for your loved ones and future generations.
Register. View your matches. Join your favorite study team. Help humanity!
When we all get involved, it speeds up the time it takes to find new treatments, cures, and — bonus! — new ways to optimize your mental and physical health.
Let’s change the world together, shall we?
Want a fun overview? Check out this video made by teens, “A World Without Research.”
Alright, let’s dig in a bit further.
Let’s break it down. We’ve all been sick at some point, or had people we love struggle with diseases, right? The purpose of health research (also goes by the nickname, ‘medical research’) is to learn how our bodies work, why we get sick, and what we can do to get and stay well. Put another way, health research is the thing that’s working behind the scenes to help find new cures, treatments, and discoveries to help you, your family, and friends (and the rest of the world, too) live better, longer, healthier lives.
Research answers big questions like, What causes cancer? How can we better treat Alzheimer’s? What kind of foods could prevent dementia? How can yoga or playing with dogs reduce stress? How much sleep should I get? The medical care and medicine we all get is all based on — and improved by — health research. It’s not the same as routine medical care you’d get, but it finds ways to boost it. Each study tries to answer specific questions with the goal of leveling-up your life overall. That sound you just heard was us chanting health research’s name!
We’re glad you agree that this is a big deal. Because The New Normal™ (TNN) movement is making health research accessible to everyone at a huge scale for the first time in history, with tons of different people and organizations coming together. And who doesn’t want to be a part of history?
TNN is all about sending out the Bat Signal to get everyone to rally for social change. People of all ages and backgrounds, academic medical centers, hospitals, researchers, corporations, nonprofits, everyone is coming together for one cause: to improve human health faster.
Another reason it’s cool? Health research isn’t limited by geography. So, someone with diabetes in L.A. can benefit from a discovery or new treatment that health research found in Chicago. Plus, some studies you can do remotely from anywhere in the world with Internet access or mail. The more we know about ourselves as humans when we’re healthy and when we’re sick adds pieces to the puzzle for finding cures and new treatments.
All it takes is easily registering in The New Normal Matchmaking Portal launching in spring 2020 to connect with things you care about. As we say, every little bit healths™! Welcome to the front lines.
First of all, hi! Second of all, we’re going to flip the script and start off by telling you who we’re not. (Ooh, provocative!) We’re not a pharmaceutical company, and we don’t make money on this. It’s all free to you and the researchers you team up with. We’re funded by grants from the government, academic medical centers, and donations.
Speaking of those heavy hitters, here’s some of the team championing The New Normal™ Campaign: the Institute for Translational Medicine (ITM), a partnership between the University of Chicago and Rush in collaboration with Advocate Health Care, the Illinois Institute of Technology (Illinois Tech), Loyola University Chicago, and NorthShore University HealthSystem, as well as the Northwestern University Clinical and Translational Sciences (NUCATS) Institute and the University of Illinois at Chicago Center for Clinical and Translational Science (CCTS).
The ITM, NUCATS, and CCTS are fueled by nearly $80 million from the National Institutes of Health (NIH) National Center for Advancing Translational Science (NCATS) Clinical and Translational Science Awards (CTSA) Program. The New Normal movement is also supported by the Chicago Department of Public Health and other regional and national partners who believe in empowering everyone to get involved in making discoveries to improve human health. *Bangs a giant drum* A very special, very huge thanks to University of Michigan for being a critical partner in sharing their technology with us.
Who are we on a deeper level? We’re people like you who want to live healthy, incredible lives and give that gift to our friends, and family. We’re also the folks giving you a platform to champion the things YOU care about—whether it’s how to optimize your health or athletic performance, finding a cure for diabetes and heart disease, accelerating your nonprofit’s cause, or simply helping make the world a better place. (Or all of the above!) We’re honored to give the public a voice, share their stories, and leave a legacy that can help everyone live their best life.
We’re so glad you asked. There are tons of ways to get involved — ranging from a super easy click of a button to showing up and participating in a research study to putting on a block party. And all make a huge difference!
HERE’S THE RUNDOWN OF HOW TO GET INVOLVED:
Visit the Matchmaking Portal starting in spring 2020 and follow the registration steps (it only takes 2 minutes!) This will kick you off to connect with opportunities in the things you already care about.
Once you’re registered, you’re officially considered a VIP (Very Important Participant) and you’ll start to get notifications of studies that you’re a great match for. You can check out your matches, find something you love, and participate—and earn that P in VIP! Bonus: some studies are as easy as something you can do from home.
To keep the movement, well, moving, take a photo of your VIP-self in action at the study or afterward, share it on social, and tag us @BeTheNewNorm staring in spring 2020 so we can give you a shout-out. This is also where you can ask us any questions, raise awareness of your story, hear ours, and pass on any breakthroughs/info you think would be helpful to friends and family.
BECOME A VIP CHAMP
Yes, that’s like a Very, Very Important Participant. Sign up for our newsletter, get involved in our fests and events, and be the go-to source in your social group for all things TNN.
Sign up for our newsletter at the bottom of the page, get involved in our fests
BINGO, BANGO YOU’RE CHANGING THE WORLD.
While we don’t like to boast, we’re so proud of the Matchmaking Portal, our VIPs like you, and our study teams that we’ll just consider the following plugs to be humble brags.
- It’s easy for all of us non-science people to understand — no confusing medical jargon or science speak here. You’ll know what’s what and exactly how you can hop in and help your cause.
- It magically connects you with things you already care about for yourself, as well as the people and causes you love. It’s like a Match.com but for health research and being a good human.
- You’re in control of everything. We’re talking things like how often you receive matches, or what kind of studies you want to see (ones that are near you, or offer compensation, etc.), or whether you want to start or stop a study at any time. You’re the boss.
- Thanks to our messaging tool, you can easily chat with your study team and ask questions or learn more all in one spot.
- It’s mobile-friendly, so you can fire it up from your phone, anytime, anywhere!
- You can make some extra $ by teaming up with studies!
- It makes health research accessible for the first time ever at this scale. Did someone say h-i-s-t-o-r-i-c?
When you’re registering, just select that you’re signing up for a loved one.
Caveat: You need to be a parent, legal guardian, or have the authority to make healthcare decisions for the person you’re enrolling.
Cool other thing: you’ll get a reminder before your kid becomes an adult so they can create their own profile and stay with TNN!
Heck yes, this is a lifetime tool!
First off, there’s a match for everyone — even healthy people!
It may sound silly, but researchers are looking for that ‘perfect match’ for each study.
Hear us out. We use the phrase ‘perfect match’ to drive home how each study is built in a very specific way to test a specific thing and answer a very specific question. That makes sure the science is as strong and clear as possible.
Have we mentioned it’s very specific? 😉
Because of this, SO many details (referred to formally as ‘inclusion criteria’) have to, ahem, *match* up between the participants and the study requirements. Things as simple as age or gender, or whether or not you drink soda pop.
It’s pretty common for a person to meet this inclusion criteria but have a health issue or other limitation that might jumble up the study findings — things like taking a certain medication, or not being able to make all of the study appointments. This is called exclusion criteria and would mean that person isn’t a perfect match.
Think of it like a recipe: sometimes adding baking soda instead of baking salt can result in a totally different dish. So while both ingredients are great, each recipe has very specific ingredients they’re looking for.
Starting in spring 2020 there will be TONS of studies on the Matchmaking Portal — with newbies added regularly — that need your help.
So keep an eye on your inbox for matches, and you can always adjust your settings to get more matches.
Remember, healthy volunteers are just as important and needed as people with medical conditions.
*picks up a megaphone* HEALTH RESEARCH IS FOR EVERYONE!
Like a fingerprint, or snowflake, or homemade pancake, every study is a little different. For example, you might be playing with puppies while your blood pressure is monitored. Or researchers may write down your medical information (such as height and weight) or look at samples of your blood, saliva or body tissue under a microscope.
This is a great time to mention that medical info and samples like those are kept in super safe places called bio-repositories or data banks. Sometimes you don’t even need to have your name tied to it, so you can keep your identity a secret and still help humanity. (Like Superman!)
Sometimes you can decide to share your info with other study teams (which means you’re basically the gift that keeps on giving).
Not only is *the type of* information collected different for every study, but *the way* researchers collect it differs as well. It could be synced with your cellphone like Facebook and other apps, or it could be collected before and after the treatment or activity, at multiple points during the study, or some other combo.
The big takeaway? Researchers will provide detailed information to you (the VIP!) about the information you’d be sharing so you can decide if you want to join that team. They’ll also let you know how and when team members will work with you to collect it. Once you’re in a study, you’re all on the same team, and teammates communicate with each other, right?
Right! So just ask away anytime you have a question!
Yes, yes, a thousand times yes! You’re the boss of your info, so you have control over what you want to share and with whom. Your information is also stored in mega-encrypted servers and other areas that have millions of dollars in security features.
Plus, the only people who have access to it are your study teams. So if you have any questions about your info, just ask them!
And like we mentioned above, sometimes data you share is ‘de-identified,’ which is a super cool way of saying it can’t be tied back to you.
Here’s what the lay ‘o the land looks like once you become a VIP!
- You’ll get emails about health research studies you may be a match for. You’ll get these as soon as you match or in daily, weekly, bi-weekly, or monthly batch notifications. Whatever you chose in your profile (‘never’ is also an option). And of course you can update those settings at any time, because we’re easygoing like that. 🙂
- You can login and say hi even when you don’t get emails. You know, scope out the latest and greatest portal happenings. Even if you don’t have anything specific in mind, the magic of the portal kicks in to auto-connect you with matches based on your profile.
- You can express interest in a study in just a click of a button, because you’re a hero in human clothing.
- Your study team will get back to you within 5 business days to let you know if you’re a good fit (not all studies are a fit for everyone, so don’t worry when one doesn’t line up. There’s plenty more where that came from, and as we like to chant: health research is for everyone!)
- If it’s a good fit, your study team will tell you what the next steps are and answer any questions you may have.
- If it turns out not to be a good fit, you can stroll around the portal, search for other studies that interest you, and connect with those study teams to keep the matchmaking movement going!
Note: We’ve designed this whole shebang to be easy and fun, but keep in mind that researchers’ and study teams’ most awesome skill and aim is the research itself. So they may email/speak in a more formal tone, but deep down inside they’re JUST as jazzed because they’ve literally dedicated their ENTIRE LIVES to working on that one area that could help humanity!
Cool Fact: you’re now considered a New Normal VIP (Very Important Participant) — just for registering. Now all that’s left for you to do is keep on teaming up with studies.
Here’s some cool background info: when researchers conduct a study within an institution (like ours!) they have to share their plans and details with an Institutional Review Board, nicknamed the IRB for short.
The IRB is like the police in the research world. They have to review and approve study plans before anything can happen.
- They double-check that researchers follow the approved plan, and they review any study changes
- They make sure everything is above-board, that participants are protected as much as possible, and that they’re able to fully understand what they’re signing up for.
- Some studies *do* have risks — like exploring a new medicine — and the IRB is there to make sure participants have all of the information about it to make whatever choice they want.
- The whole goal of the IRB is to have radical transparency and protect everyone involved!
P.S. Keep in mind that TONS of studies have little to no risk, like donating data or taking a survey.
But you know what they say about risks? Without them, there’s no reward.
Just like brave souls explored the Wild West that led to the San Francisco and Denver we know today, humans before us took a risk to explore new treatments, and that’s led to everything from over-the-counter aspirin to the chemotherapy that’s helped people become cancer-free.
We have great respect for all VIPs, especially those who took great risks for humanity, just like we have great respect for our veterans who took great risks for our country. #Grateful
Sometimes you get compensated with money or a gift card for your time or travel, but you’ll *always* get compensated with the karma of helping yourself and humanity. And that is priceless, right? Right.
And get a load of this: there are some people who travel all over the country participating in research for a living. Read the wild story here.
Sign up at the bottom of the page to be the first to know of the TNN Matchmaking Portal launch so you can register, find, and match with opportunities that pay. Register for the TNN Matchmaking Portal here to find and match with opportunities that pay.
Not at all. Registering means you want to help, and it’s just dipping your toe in the water so that you can learn more/see what you match for to help humanity!
You’re in total control of whether you participate in a study, even after you match. And if you decide to join a team, you can stop at any time. Zero repercussions.
Your study team wants this to be a fulfilling experience for you and for you to feel safe and excited about the impact you’re making!
It’s totally up to you! Starting in spring 2020, there will be lots of options for whatever time you have for this new helping humanity hobby:
2 seconds: Hanging with us on social @BeTheNewNorm and sharing a post.
3 minutes: Registering on the Matchmaking Portal.
Spare time: Participating in studies from the comfort of your own home!
Nearby: Participate in studies near you – those times are different for each study, so just check out the time estimates in the portal descriptions or ask your study team for the info!
1 hour: Attend, volunteer, or host New Normal™ events!
Every little bit healths™.
You may see this answer coming…but it depends on each study and how fast they can get the team of VIPs like you together to get it done!
It could range from months to years, but you being a part of this movement is helping speed that up. (Once you’re done with your participation, just keep in touch with your study team right in the portal using the inbox and messaging feature.)
Something cool to think about: even if a study finds out that something *doesn’t* work, that’s still considered a success because it means we are one step closer to finding what *does* work.
Like our friend Tom Edison, who tried 100+ times before getting the lightbulb right, we’re gonna keep at it until we find the (b)right solution.
Whatever is on your mind!
Since — you guessed it — all studies are different, there isn’t a set of questions that can capture everything.
But thanks to input from people like you, we’ve tried to cover a lot of what you might be curious about (like compensation, results, time, personal information, etc.) in this FAQ so you have a general idea of what to expect and can ask your study teams for more details.
Absolutely! We’re all in this together, and we treasure your feedback so this movement can continue to grow and help humanity. Tell us what you love so it’s kept as TNN grows. Tell us what you hate so everyone can evolve together. And share your brilliant ideas and stories! The best place to do all of that is pinging us at firstname.lastname@example.org
Yep — there are almost as many types of health research as there are pizza toppings. (Great, now we’re craving pizza…) Some studies are done to find out how to optimize your health, some are done to figure out what causes disease, some are done to find out how to prevent disease, and some are done to improve how to treat disease. Participating can look like filling out a survey or it can involve taking medication or going to clinic appointments.
We’ll break it down real quick(ish). Most studies fall into one of these buckets:
Looking and Learning (AKA Observational studies) follow the same group of people over time to check out what happens to their health. Example: Check out the recipe for happiness – based on science – here thanks to the longest study on human happiness ever!
Big Data Views (AKA Epidemiological studies) are a mouthful to say, huh? These look for patterns of diseases in large groups of people. For example, looking at what kinds of flu outbreaks have occurred in the world and using that info to decide what to put in that year’s flu vaccine. You can share this tidbit at your next party. 😉
Boosting Behavior (AKA Intervention studies) aren’t as dramatic as they sound. These studies look at ways to change behaviors that impact your health. One example would be a study of how increased exercise affects weight, diabetes, or heart disease.
Stay Healthy (AKA Prevention studies) look for ways to keep people from getting sick. Like, how an apple a day is better for you than a donut a day. Sometimes these studies explore how we behave as humans to answer questions like, do smartphone notifications really help us remember to take our medicine? Or can exercise help reduce some of the icky side effects of chemotherapy? Sometimes the thing to prevent us getting sick could be a new medicine or vaccine – these studies are called clinical trials (see below. This will be on the pop quiz later. Just kidding. Maybe.)
New Medicines and Cures (AKA Clinical trials) are studies done to learn the best ways to treat or prevent disease. Like kicking cancer’s butt, annihilating Alzheimer’s, and curing [Insert the disease you hate the most here]. This kind of study tests a new drug, vaccine, or medical device. Clinical trials can only start after lab and animal studies show that the new treatment is likely safe to test and work on us humans. (In case anyone has PETA on speed dial, the government requires this lab and animal step for ALL medications you take – we’re not the rule-maker, just the messenger! ) Participants in clinical trials are mega-monitored to stay on top of potential side effects from the treatments involved.
Another cool(ish) fact about clinical trials is that they’re done in stages called phases 1-4. If you’re thinking about teaming up with one, your study team will tell you which phase of testing the medicine or device is in — phase 1 is early in the process and phase 4 is the last step before it’s approved for widespread public use. Coming soon to a pharmacy near you!
Look, you read all the way to the bottom! *high-fives*!