Research and You! Alicia Sloan, MPH, MSW Jim Hunziker, MSN, ARNP Michael Donahue, BS MS Center of...
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Transcript of Research and You! Alicia Sloan, MPH, MSW Jim Hunziker, MSN, ARNP Michael Donahue, BS MS Center of...
Research and You! Research and You! Research and You! Research and You! Alicia Sloan, MPH, MSWAlicia Sloan, MPH, MSW
Jim Hunziker, MSN, ARNPJim Hunziker, MSN, ARNPMichael Donahue, BSMichael Donahue, BS
MS Center of Excellence (MSCoE) – WestMS Center of Excellence (MSCoE) – WestVA Puget Sound Health Care SystemVA Puget Sound Health Care System
Seattle, WashingtonSeattle, Washington
March 8, 2008March 8, 2008
Jim
Mike
Alicia
• MS Centers of Excellence (MSCoE): Funded by the VA in January 2003 to address health needs of veterans with MS on a national level.
• MSCoE-East: Baltimore, MD & Washington, DC• MSCoE –West: Portland, OR & Seattle, WA
• MS research is part of the mission of MSCoE, along with (1) Clinical Care, (2) Education, and (3) Informatics.
• Who does the research? Interdisciplinary professionals (several different disciplines) who want to improve health care for people with MS.
• For example: physicians, nurses, social workers, psychologists, occupational therapists, physical therapists, etc.
• Each discipline gives a different perspective to enrich research.
MSCoE - Background
Presented by Alicia Sloan, slide 2
MSCoE - Research Focus
• Conduct studies that address special health care needs of veterans with MS (not typical in the “civilian” population of MS): – Much higher proportion of males– More disabled– Higher % of progressive forms of MS
Presented by Alicia Sloan, slide 3
MSCoE - Types of Research• Pre-clinical & clinical trials: Clinical trial of a new
medication or intervention, or new use or “off-label” use of existing medication or intervention. Often several phases/stages of research before FDA-approved.
• Pilot studies: Involves a smaller number of people. May help decide if it makes sense to do a larger study in the future.
• Multi-site studies: Involves more than one VA site and/or in collaboration with non-VA site.
• Health services research: Improve quality of patient services.
• Economics research: Improve costs of care for MS.• Secondary data analysis: Obtain data from existing
databases to answer a question.
Bottom Line: We learn from you and your health experiences!
Presented by Alicia Sloan, slide 4
National MS Data Repository:
– What is it? Began as a MS needs assessment study that developed into a large database. Links to other VA databases now. A rich database about veterans with MS. Researchers apply to obtain data to answer a question about veterans with MS.
– Investigator Studies: Exercise, obesity, pain, pulmonary (lung), kidney stones, spasticity, tobacco use, immunizations, ER use, VA costs.
– Large Study: Data Validation of the Repository – Confirming the data in the repository is accurate.
Bottom Line: Data Repository helps us to answer questions about health problems of veterans with MS and develop future research and health interventions to address the problems.
MSCOE – Current Research
Presented by Alicia Sloan, slide 5
Specialty Care: Examining MS-specific care appointments & cost
Home Telehealth: An intervention to improve access to care and improve quality of care for veterans with chronic care needs using a home telehealth monitor. MS Core Question Set (national home telehealth
program) DMT Adherence (health behavior change)
Stroke Robotics Trial – May inform future MS robotics clinical trials for upper extremity rehab; “piggy-back” studies.
MSCOE – Current Studies
Presented by Alicia Sloan, slide 6
Gulf War study with MSCoE–East – Using VA and other DOD databases. Study is a result of concern for US veterans deployed to the 1990-1991 Gulf War (GW) may be at increased risk in developing neurologic disease. Potentially controversial.
Medical Residents/PhD Students – Provider Attitudes for End of Life Care for MS, Obesity, Nursing Telehomecare, Medical Ethics, Spasticity, Kidney Stones, and ER-use.
MSCOE – Current Studies (cont.)
Presented by Alicia Sloan, slide 7
– Home Telehealth & Exercise – health behavior change to improve fatigue and cognition.
– Ginkgo biloba - clinical trial with Portland VA to improve fatigue and memory.
MSCOE – Future Studies
Presented by Alicia Sloan, slide 8
• You might receive a letter announcing a MS study
• You might see flyers or posters about a study• You might be approached in MS clinic• Check VA MSCoE website: http://www.va.gov/ms
• Check other MS organizations’ websites, eg: www.nationalmssociety.org/ www.mscare.org/cmscwww.msaa.com www.msfocus.org
Check with your local university or college website
MS Research: How do I participate?
Presented by Alicia Sloan, slide 9
• Published in MS Professional journals.• Published in Patient centered journal articles. • Published in MSCoE website articles:
http://www.va.gov/ms/
• Presentations at national conferences to share knowledge with other MS professionals.
• Published in VA newsletters, video teleconferences, telephone conference calls.
• Published on websites of MS organizations.
MSCOE – Research Results
Presented by Alicia Sloan, slide 10
SO, WHAT IS RESEARCH ALL ABOUT, ANYWAY?
• A way of increasing our understanding of how and why our bodies behave the way they do!!
Presented by James Hunziker, slide 11
OVERVIEW
• What Research Is and Isn’t• A Model of Scientific Inquiry• Different Types of Research• What Method to Use When• Applied and Basic Research
Presented by James Hunziker, slide 12
Why do we do research?
• Most Medical Practice is based on practices that have always been done (80% or so)
• As a result of research, more practice is being based on methods that we now know are correct
• Research is how the “Best Practices” are determined
Presented by James Hunziker, slide 13
An example• A good example of this is: What is
the best way to take a temperature?
• There are many choices:– Orally– Rectally– Underarm– Tympanic (ear)– Forehead
Presented by James Hunziker, slide 14
• Each method has it’s drawbacks• Many treatments are (partially)
based on whether a person has a fever, and if so, how high the temperature is
Presented by James Hunziker, slide 15
Taking a Temperature, continued…
• Research has shown that – Tympanic and/or Rectal temperatures are
the most accurate (who wants a thermometer put in their rectum?)
– Oral temperatures are good as long as nothing has been taken orally for at least 30 minutes
– Underarm is not very accurate, but must be used in some situations
– Forehead temperatures work for children as a screening tool, but are less accurate
than oral/tympanic
Presented by James Hunziker, slide 16
Taking a Temperature Findings
Another question that has been looked at is
• What is the best way to treat a pressure ulcer?– Massage?– Sugar?– Wet-to-dry dressings?– Hydrocolloids?– Dry dressings?
• Research was used to demonstrate what was best, what should be avoided
Presented by James Hunziker, slide 17
What are the Research methods?
• A THEORY of why something happens is developed
• This theory helps by– Organizing the information there is
about the problem/issue/medication– Explains past findings– Predicts or validates new or current
use
Presented by James Hunziker, slide 18
RESEARCH IS BASED ON THE WORK OF OTHERS
• Past research or findings helps guide new research
• Research does NOT copy the work of others, but
• Expands on what others have done
Presented by James Hunziker, slide 19
To be valid, Research findings can be repeated by
others
• Repeatability is a sign of credible science
• Replication guides future research
Presented by James Hunziker, slide 20
RESEARCH IS GENERALIZABLE
• Research should apply to situations outside of the study setting (i.e. general life/living)
Presented by James Hunziker, slide 21
RESEARCH IS NOT DONE IN INTELLECTUAL ISOLATION
• For example:• It is done as a result of a question being
raised • It is based on some logical rationale• It is tied to a theory of why something
should be
Presented by James Hunziker, slide 22
RESEARCH IS “DOABLE”
• Good research questions can be translated into projects that can be done!
Presented by James Hunziker, slide 23
RESEARCH IS ONGOING
• Research generates new questions• Research is incremental• A question is asked, then after
approval researched• Based on the answers from the
previous study, new research questions are asked
Presented by James Hunziker, slide 24
The steps of the research process:
Presented by James Hunziker, slide 25
• Refer to slide 24
Presented by James Hunziker, slide 26
Steps of the Research process continued.
The first item in doing research is to
• Ask or develop the right question to ask,
• Identify a need• Have a medication or product
that needs to be tested
Presented by James Hunziker, slide 27
IDENTIFYING IMPORTANT FACTORS
• Not fully investigated• Advance understanding• Can be investigated• Are interesting• Lead to more questions
Presented by James Hunziker, slide 28
A HYPOTHESIS IS FORMULATED
• “If…then” statements• Objective extension of the original
question• In a testable form
Presented by James Hunziker, slide 29
Decide on Research Method
• There are many research methods that can be used. Here are some:– Experimental, true Experimental, or
Non-experimental Research– Applied vs. Basic research– Descriptive research– Historical research
Presented by James Hunziker, slide 30
Which research method to use is determined by
• Nature of question asked• Method used to answer question• Degree of precision of method
Presented by James Hunziker, slide 31
RELEVANT INFORMATION IS COLLECTED
• Hypotheses posit a relationship between different factors
• Data are collected that will confirm or refute the hypothesis
• Hypotheses are testable (not provable)
Presented by James Hunziker, slide 32
HYPOTHESIS MUST BE TESTED
• Inferential statistics – Separate effects of factors from
effects of chance– Assign a probability level to obtained
data
Presented by James Hunziker, slide 33
THE HYPOTHESIS IS WORKED WITH
• If the hypothesis is confirmed– Plan new research
• If the hypothesis is refuted– Try to understand what other factors
might be important
Presented by James Hunziker, slide 34
Depending on what is found, the theory may
need to be reconsidered
• Theories can be modified• Leading to new questions
Presented by James Hunziker, slide 35
Participating in Research:What you should know
Presented by Michael Donahue, slide 36
Participating in Research: What you should know
• There are regulations in place to help protect people who participate in research
• Studies are approved by local ethics boards and agencies such as Food and Drug Administration (FDA) and the National Institutes of Health (NIH)
Presented by Michael Donahue, slide 37
Participating in Research: What you should know
• These approvals mean they believe the research is scientifically valid, and
• based on the available information, risks are minimized and worth the potential benefit.
Presented by Michael Donahue, slide 38
Participating in Research: What you should know
• These approvals do not mean:– there aren’t risks involved– you will benefit– the study is right for you
Presented by Michael Donahue, slide 39
Presented by Michael Donahue, slide 40
Participating in Research: Questions to Ask
• Why is the research being done? • Why do they think this treatment
might be effective?• What kind of tests will you have?• What are the risks?
Presented by Michael Donahue, slide 41
Participating in Research: Questions to Ask (cont.)
• How do the risks compare to the risks of standard treatments?
• How much time is involved (hours, number of visits, days of the week)?
• Will it cost anything?• How will your privacy be maintained?
Presented by Michael Donahue, slide 42
Participating in Research:What You Should Know
• You have the right to withdraw at any time.
• Ask questions if you don’t understand something!
• Try to read the consent form in advance of the appointment.
Presented by Michael Donahue, slide 43
Final Words
Can you benefit from participating in a research study? Absolutely!
Are there risks! Yes!
Only you can decide if it’s right for you!
Presented by Michael Donahue, slide 44
Presented by Michael Donahue, slide 45
For more information on research:
• www.clinicaltrials.gov• VA’s MSCoE website: www.va.gov/ms• Non-VA MS organizations:
www.nationalmssociety.org/www.mscare.org/cmsc
www.msaa.comwww.msfocus.org
Presented by Michael Donahue, slide 46