WEBVTT

NOTE
language:en-US

NOTE Confidence: 0.8932185173034668

00:00:08.010 --> 00:00:09.970
Hello, I'm Jason.

NOTE Confidence: 0.5081380605697632

00:00:10.040 --> 00:00:12.200
I'm an incident or a hemodialysis patient.

NOTE Confidence: 0.9453669190406799

00:00:12.440 --> 00:00:15.200
Hi, I'm Nate and I'm a dialysis nurse.

NOTE Confidence: 0.9450326561927795

00:00:15.480 --> 00:00:18.080
We're here to talk about research that involves patients.

NOTE Confidence: 0.8604897260665894

00:00:18.760 --> 00:00:21.491
I've been on dialysis for three years now, and I've

NOTE Confidence: 0.8604897260665894

00:00:21.545 --> 00:00:24.545
been asked to participate in research students for a few

NOTE Confidence: 0.8604897260665894

00:00:24.598 --> 00:00:24.920
times.

NOTE Confidence: 0.9064856171607971

00:00:25.440 --> 00:00:28.290
At first I wasn't sure what to think because I

NOTE Confidence: 0.9064856171607971

00:00:28.352 --> 00:00:31.760
didn't know much about research, but I've learned more.

NOTE Confidence: 0.9397481083869934

00:00:32.200 --> 00:00:34.940
Jason and I helped make this video to teach people

NOTE Confidence: 0.9397481083869934

00:00:34.995 --> 00:00:38.119
about dialysis research and what it means to participate.

NOTE Confidence: 0.9719933867454529

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We hope that you find this 8 minute video helpful.

NOTE Confidence: 0.9624517560005188

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Let's start with what the word research means.

NOTE Confidence: 0.9690992832183838

00:00:45.680 --> 00:00:48.915
Research is a process used to find out new knowledge

NOTE Confidence: 0.9690992832183838

00:00:48.977 --> 00:00:50.160
or new information.

NOTE Confidence: 0.9674579501152039

00:00:50.880 --> 00:00:53.440
It starts with an idea or a question.

NOTE Confidence: 0.9478990435600281

00:00:54.040 --> 00:00:57.670
Research can be scientific experiments in a lab or studies

NOTE Confidence: 0.9478990435600281

00:00:57.732 --> 00:00:59.359
with patients in a clinic.

NOTE Confidence: 0.9633693695068359

00:01:00.160 --> 00:01:03.760
Research allows us to find new treatments and help patients.

NOTE Confidence: 0.9208781719207764

00:01:04.080 --> 00:01:07.920
For example, the dialysis machines and medications we use today

NOTE Confidence: 0.9208781719207764

00:01:07.980 --> 00:01:10.480
were created and tested through research.

NOTE Confidence: 0.8709619045257568

00:01:10.760 --> 00:01:12.960
Research that involved people like you.

NOTE Confidence: 0.9679399132728577

00:01:14.760 --> 00:01:17.996
Most often, the goal of research is to make discoveries

NOTE Confidence: 0.9679399132728577

00:01:18.055 --> 00:01:19.880
that will help future patients.

NOTE Confidence: 0.9614456295967102

00:01:20.360 --> 00:01:24.310
Research can be exciting and can lead to promising treatments,

NOTE Confidence: 0.9614456295967102

00:01:24.374 --> 00:01:27.560
but like many things, it may come with challenges.

NOTE Confidence: 0.9663697481155396

00:01:28.120 --> 00:01:31.237
Research can take a long time and doesn't always give

NOTE Confidence: 0.9663697481155396

00:01:31.296 --> 00:01:32.120
clear answers.

NOTE Confidence: 0.9653416275978088

00:01:32.640 --> 00:01:35.661
If you decide to participate in research, you may not

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00:01:35.718 --> 00:01:38.398
see its effect on your own medical care, but it

NOTE Confidence: 0.9653416275978088

00:01:38.455 --> 00:01:40.280
could help others in the future.

NOTE Confidence: 0.9748883247375488

00:01:41.840 --> 00:01:44.766
Many people think about medicines when they hear the word

NOTE Confidence: 0.9748883247375488

00:01:44.817 --> 00:01:45.279
research.

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00:01:45.680 --> 00:01:49.150
As a dialysis patient, you may take binder pills or

NOTE Confidence: 0.960629403591156

00:01:49.218 --> 00:01:50.919
blood pressure medicines.

NOTE Confidence: 0.9255515336990356

00:01:51.160 --> 00:01:54.742
As a clinic staff, you may give patients EPO or

NOTE Confidence: 0.9255515336990356

00:01:54.818 --> 00:01:55.200
IRON.

NOTE Confidence: 0.9630069136619568

00:01:56.120 --> 00:02:00.573
Years of research went into making these medicines, and thousands

NOTE Confidence: 0.9630069136619568

00:02:00.641 --> 00:02:04.683
of patients, clinic staff and doctors made them possible by

NOTE Confidence: 0.9630069136619568

00:02:04.752 --> 00:02:08.519
participating in the research studies that tested them.

NOTE Confidence: 0.9571151733398438

00:02:08.720 --> 00:02:10.720
It was a team effort.

NOTE Confidence: 0.968643069267273

00:02:11.200 --> 00:02:13.565
Now let's take a moment to talk about types of

NOTE Confidence: 0.968643069267273

00:02:13.617 --> 00:02:14.080
research.

NOTE Confidence: 0.9295339584350586

00:02:14.760 --> 00:02:16.960
There are a lot of different types of research.

NOTE Confidence: 0.9477236866950989

00:02:17.320 --> 00:02:20.770
There are studies that test new medicines to treat symptoms

NOTE Confidence: 0.9477236866950989

00:02:20.829 --> 00:02:24.163
like itching and upset stomach, others about ways to stop

NOTE Confidence: 0.9477236866950989

00:02:24.221 --> 00:02:27.789
cramping and blood pressure drops, and still others about how

NOTE Confidence: 0.9477236866950989

00:02:27.847 --> 00:02:30.479
to increase the number of kidney transplants.

NOTE Confidence: 0.9623134136199951

00:02:31.560 --> 00:02:35.089
So far, we've talked about research that asks volunteers to

NOTE Confidence: 0.9623134136199951

00:02:35.149 --> 00:02:38.319
do something like take a medicine or complete a task.

NOTE Confidence: 0.9522597789764404

00:02:38.720 --> 00:02:41.120
You may hear this called a clinical trial.

NOTE Confidence: 0.9610854387283325

00:02:41.840 --> 00:02:44.589
A clinical trial is a type of study that tests

NOTE Confidence: 0.9610854387283325

00:02:44.649 --> 00:02:47.039
health related treatments or procedures.

NOTE Confidence: 0.9142181873321533

00:02:47.600 --> 00:02:50.640
But research is more than clinical trials.

NOTE Confidence: 0.9652676582336426

00:02:51.639 --> 00:02:55.880
Research can include reviewing information from medical charts or asking

NOTE Confidence: 0.9652676582336426

00:02:55.939 --> 00:02:58.707
people what they think or how they feel about a

NOTE Confidence: 0.9652676582336426

00:02:58.766 --> 00:02:59.119
topic.

NOTE Confidence: 0.9653080701828003

00:03:01.040 --> 00:03:03.320
Research comes in all shapes and sizes.

NOTE Confidence: 0.9610137343406677

00:03:03.520 --> 00:03:06.330
Studies can be small, with a few patients at just

NOTE Confidence: 0.9610137343406677

00:03:06.388 --> 00:03:09.199
one clinic, or they can be big, with thousands of

NOTE Confidence: 0.9610137343406677

00:03:09.256 --> 00:03:10.920
patients from many countries.

NOTE Confidence: 0.9567712545394897

00:03:11.600 --> 00:03:14.672
Studies can be short, such as doing just one interview,

NOTE Confidence: 0.9567712545394897

00:03:14.728 --> 00:03:17.689
or they can be long, where patients are followed over

NOTE Confidence: 0.9567712545394897

00:03:17.745 --> 00:03:18.360
many years.

NOTE Confidence: 0.9701308608055115

00:03:18.760 --> 00:03:20.520
Every study is a little different.

NOTE Confidence: 0.9606174230575562

00:03:21.280 --> 00:03:25.325
In general, research is how scientists and doctors answer questions

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00:03:25.386 --> 00:03:28.345
and get information that they hope can be used to

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00:03:28.405 --> 00:03:30.640
improve the lives of future patients.

NOTE Confidence: 0.8803750276565552

00:03:31.639 --> 00:03:34.560
Wow, I didn't realize that there was so many types

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00:03:34.619 --> 00:03:35.319
of research.

NOTE Confidence: 0.8233204483985901

00:03:35.920 --> 00:03:37.791
I was in a study a while back where I

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00:03:37.841 --> 00:03:40.320
talked about symptoms that bother me on dialysis.

NOTE Confidence: 0.8907685875892639

00:03:40.920 --> 00:03:43.562
I was with a group of patients that got together

NOTE Confidence: 0.8907685875892639

00:03:43.617 --> 00:03:45.599
and the research asked us questions.

NOTE Confidence: 0.9028581976890564

00:03:46.280 --> 00:03:49.432
I enjoyed hearing others talk about their symptoms, and it

NOTE Confidence: 0.9028581976890564

00:03:49.487 --> 00:03:52.313
felt pretty good to know that sharing my story could

NOTE Confidence: 0.9028581976890564

00:03:52.368 --> 00:03:52.639
help.

NOTE Confidence: 0.8501636385917664

00:03:53.240 --> 00:03:55.872
I once helped in research by giving patients a study

NOTE Confidence: 0.8501636385917664

00:03:55.923 --> 00:03:56.479
medication.

NOTE Confidence: 0.9373154640197754

00:03:56.920 --> 00:03:59.451
I chose to help because I wanted to support patients

NOTE Confidence: 0.9373154640197754

00:03:59.499 --> 00:04:00.959
beyond those in my own clinic.

NOTE Confidence: 0.9240192174911499

00:04:01.400 --> 00:04:03.560
Jason, what made you want to participate?

NOTE Confidence: 0.7412539720535278

00:04:04.480 --> 00:04:06.699
Well, Nate, I wanted to help others who sit in

NOTE Confidence: 0.7412539720535278

00:04:06.747 --> 00:04:07.519
a chair like me.

NOTE Confidence: 0.8747591972351074

00:04:08.320 --> 00:04:10.930
I wanted to try to give them a better picture

NOTE Confidence: 0.8747591972351074

00:04:10.988 --> 00:04:13.947
so maybe they wouldn't have to go through what I've

NOTE Confidence: 0.8747591972351074

00:04:14.005 --> 00:04:14.760
gone through.

NOTE Confidence: 0.8289289474487305

00:04:15.560 --> 00:04:18.786
I volunteered because the researchers took the time to explain

NOTE Confidence: 0.8289289474487305

00:04:18.838 --> 00:04:21.440
the study to me and that made me feel comfortable.

NOTE Confidence: 0.9709039926528931

00:04:22.320 --> 00:04:24.200
Let's go back to the video and learn more.

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00:04:25.839 --> 00:04:28.855
If you were interested in participating in research, there are

NOTE Confidence: 0.8887892961502075

00:04:28.904 --> 00:04:30.120
important things to know.

NOTE Confidence: 0.9713069200515747

00:04:30.760 --> 00:04:34.074
No matter the type, no matter the size, no matter

NOTE Confidence: 0.9713069200515747

00:04:34.142 --> 00:04:38.201
the length, all studies are reviewed by experts not involved

NOTE Confidence: 0.9713069200515747

00:04:38.268 --> 00:04:39.959
with the research itself.

NOTE Confidence: 0.9656659364700317

00:04:40.600 --> 00:04:45.064
This group of experts is called an Institutional Review Board,

NOTE Confidence: 0.9656659364700317

00:04:45.136 --> 00:04:46.360
or IRB for short.

NOTE Confidence: 0.9441528916358948

00:04:47.080 --> 00:04:49.768
The IRB makes sure that studies are safe and that

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00:04:49.823 --> 00:04:52.072
people have a way to get out of the study

NOTE Confidence: 0.9441528916358948

00:04:52.127 --> 00:04:53.280
if they want to stop.

NOTE Confidence: 0.9734420776367188

00:04:54.040 --> 00:04:56.973
All researchers work from a written plan that they have

NOTE Confidence: 0.9734420776367188

00:04:57.026 --> 00:04:57.560
to follow.

NOTE Confidence: 0.9625970125198364

00:04:58.120 --> 00:05:01.522
The IRB must review and approve this plan before a

NOTE Confidence: 0.9625970125198364

00:05:01.591 --> 00:05:02.679
study can start.

NOTE Confidence: 0.9633127450942993

00:05:03.560 --> 00:05:06.588
If you are asked to participate in research, you should

NOTE Confidence: 0.9633127450942993

00:05:06.643 --> 00:05:08.239
never feel pressure to do it.

NOTE Confidence: 0.9644260406494141

00:05:08.520 --> 00:05:12.626
It's your choice, and if you do decide to participate,

NOTE Confidence: 0.9644260406494141

00:05:12.702 --> 00:05:16.200
you can change your mind and stop at any time.

NOTE Confidence: 0.9605896472930908

00:05:16.880 --> 00:05:20.679
Stopping or leaving a study will not affect your dialysis

NOTE Confidence: 0.9605896472930908

00:05:20.746 --> 00:05:21.079
care.

NOTE Confidence: 0.9666644930839539

00:05:22.480 --> 00:05:25.805
It's important to know that research can have risks, and

NOTE Confidence: 0.9666644930839539

00:05:25.864 --> 00:05:30.079
depending on the study, participants may experience discomfort or harm.

NOTE Confidence: 0.9745854139328003

00:05:30.920 --> 00:05:34.155
Any and all risks must be explained to people before

NOTE Confidence: 0.9745854139328003

00:05:34.217 --> 00:05:35.959
they sign up to participate.

NOTE Confidence: 0.9306646585464478

00:05:36.720 --> 00:05:40.162
Researchers and the IRB make sure that any risks are

NOTE Confidence: 0.9306646585464478

00:05:40.228 --> 00:05:43.539
as small as possible and that patients know who to

NOTE Confidence: 0.9306646585464478

00:05:43.605 --> 00:05:46.319
go to if they have problems or questions.

NOTE Confidence: 0.901656985282898

00:05:46.680 --> 00:05:49.181
For most studies, you will be asked to sign a

NOTE Confidence: 0.901656985282898

00:05:49.237 --> 00:05:49.960
consent form.

NOTE Confidence: 0.891849160194397

00:05:50.560 --> 00:05:54.225
A consent form has information about the study's possible risks

NOTE Confidence: 0.891849160194397

00:05:54.283 --> 00:05:55.040
and benefits.

NOTE Confidence: 0.9719015955924988

00:05:55.360 --> 00:05:58.166
It also tells you why the research is being done

NOTE Confidence: 0.9719015955924988

00:05:58.224 --> 00:05:59.919
and how it might help others.

NOTE Confidence: 0.9739939570426941

00:06:00.280 --> 00:06:02.640
This way, you know what you're signing up for.

NOTE Confidence: 0.9662322998046875

00:06:04.040 --> 00:06:07.585
All researchers must also make sure that your information is

NOTE Confidence: 0.9662322998046875

00:06:07.644 --> 00:06:09.240
kept safe and confidential.

NOTE Confidence: 0.9693229794502258

00:06:09.640 --> 00:06:14.080
Only researchers can access your study information, no one else.

NOTE Confidence: 0.20639850199222565

00:06:15.160 --> 00:06:15.880
Altogether.

NOTE Confidence: 0.9743234515190125

00:06:15.880 --> 00:06:19.245
This means that researchers must follow many rules to make

NOTE Confidence: 0.9743234515190125

00:06:19.303 --> 00:06:21.160
sure you are safe and protected.

NOTE Confidence: 0.9737741947174072

00:06:21.880 --> 00:06:24.720
Research has many steps that you may never see.

NOTE Confidence: 0.9700644016265869

00:06:26.000 --> 00:06:29.749
Although research may have risks, and those risks differ depending

NOTE Confidence: 0.9700644016265869

00:06:29.806 --> 00:06:32.646
on the study, there are many reasons why you might

NOTE Confidence: 0.9700644016265869

00:06:32.703 --> 00:06:33.839
want to participate.

NOTE Confidence: 0.9325006008148193

00:06:34.279 --> 00:06:37.548
For example, you might want the chance to learn from

NOTE Confidence: 0.9325006008148193

00:06:37.611 --> 00:06:40.879
others experiences or help future dialysis patients.

NOTE Confidence: 0.9325955510139465

00:06:41.400 --> 00:06:44.089
Or you might be interested in the research topic or

NOTE Confidence: 0.9325955510139465

00:06:44.141 --> 00:06:46.040
just want to learn about new things.

NOTE Confidence: 0.9681713581085205

00:06:46.520 --> 00:06:49.592
It is important to remember that some research does not

NOTE Confidence: 0.9681713581085205

00:06:49.648 --> 00:06:52.720
lead to clear answers, and many times research does not

NOTE Confidence: 0.9681713581085205

00:06:52.776 --> 00:06:55.848
lead to a direct benefit for those participating in the

NOTE Confidence: 0.9681713581085205

00:06:55.904 --> 00:06:56.239
study.

NOTE Confidence: 0.9619297981262207

00:06:57.760 --> 00:07:01.546
However, studies that don't lead to clear answers can lead

NOTE Confidence: 0.9619297981262207

00:07:01.612 --> 00:07:04.484
to new ideas, and new ideas can lead to more

NOTE Confidence: 0.9619297981262207

00:07:04.550 --> 00:07:07.880
research and eventual benefits for future patients.

NOTE Confidence: 0.9070919156074524

00:07:08.320 --> 00:07:10.400
But even small studies may take a while.

NOTE Confidence: 0.9327537417411804

00:07:10.560 --> 00:07:12.800
Research takes a lot of time.

NOTE Confidence: 0.9444820880889893

00:07:14.040 --> 00:07:17.409
Researchers should tell you how long a study will take

NOTE Confidence: 0.9444820880889893

00:07:17.472 --> 00:07:20.841
and when you should expect updates, but if they don't,

NOTE Confidence: 0.9444820880889893

00:07:20.904 --> 00:07:21.840
be sure to ask.

NOTE Confidence: 0.9418377876281738

00:07:22.080 --> 00:07:25.840
It's important that you ask researchers all your questions.

NOTE Confidence: 0.9714297652244568

00:07:26.280 --> 00:07:28.280
All questions are good questions.

NOTE Confidence: 0.9317147135734558

00:07:29.240 --> 00:07:32.175
The goal of research is to create better futures for

NOTE Confidence: 0.9317147135734558

00:07:32.232 --> 00:07:35.337
people on dialysis, those who care for them in clinics,

NOTE Confidence: 0.9317147135734558

00:07:35.393 --> 00:07:37.200
and those who help them at home.

NOTE Confidence: 0.9529836177825928

00:07:37.840 --> 00:07:41.950
Your involvement in research as a patient care partner, staff

NOTE Confidence: 0.9529836177825928

00:07:42.018 --> 00:07:44.040
member or doctor is important.

NOTE Confidence: 0.9719781875610352

00:07:44.400 --> 00:07:46.840
You are an important member of the team.

NOTE Confidence: 0.9635835886001587

00:07:47.640 --> 00:07:50.520
Research is going on around us all the time.

NOTE Confidence: 0.9238260984420776

00:07:50.920 --> 00:07:54.300
Today's research could help the patients of tomorrow have a

NOTE Confidence: 0.9238260984420776

00:07:54.357 --> 00:07:55.159
better future.

NOTE Confidence: 0.933451771736145

00:07:56.240 --> 00:07:58.280
Thank you for watching our video.

NOTE Confidence: 0.8995541334152222

00:07:59.040 --> 00:08:02.240
Hey, even making this video involved research.

NOTE Confidence: 0.9275444746017456

00:08:02.640 --> 00:08:06.342
Thank you to the more than 75 dialysis patients, care

NOTE Confidence: 0.9275444746017456

00:08:06.411 --> 00:08:10.323
partners, clinic staff and doctors who gave us the ideas

NOTE Confidence: 0.9275444746017456

00:08:10.393 --> 00:08:12.000
that shaped this video.

NOTE Confidence: 0.951199471950531

00:08:12.360 --> 00:08:13.680
It was a team effort.

NOTE Confidence: 0.9544793367385864

00:08:14.320 --> 00:08:18.808
To learn more about research and find kidney research opportunities

NOTE Confidence: 0.9544793367385864

00:08:18.875 --> 00:08:19.879
for you, go to.

NOTE Confidence: 0.41492757201194763

00:08:32.440 --> 00:08:32.960
I had it.

NOTE Confidence: 0.6691762804985046

00:08:32.960 --> 00:08:33.280
I had it.

NOTE Confidence: 0.7089299559593201

00:08:33.360 --> 00:08:33.800
I had it.

NOTE Confidence: 0.7820005416870117

00:08:34.040 --> 00:08:34.520
You got this.

NOTE Confidence: 0.35177603363990784

00:08:42.600 --> 00:08:43.000
No, not.

NOTE Confidence: 0.35239070653915405

00:08:43.600 --> 00:08:43.680
Too.

NOTE Confidence: 0.7408754229545593

00:08:43.800 --> 00:08:47.280
Yeah, let's just take a breath, Kenny, when you're ready.

NOTE Confidence: 0.5884642004966736

00:08:51.600 --> 00:08:53.720
Involved, OK, that's fine.

NOTE Confidence: 0.7554734945297241

00:08:54.000 --> 00:08:56.160
So we're still rolling and we're going to do.

NOTE Confidence: 0.5385720133781433

00:08:56.920 --> 00:08:57.480
Dissolve.

NOTE Confidence: 0.45448336005210876

00:09:04.080 --> 00:09:05.920
OK, still rolling.