RESEARCH 101 TRAINING
Session 1: Intro & Research Design
June 15, 2017 @ 5:30-7:00 pm Eastern
Welcome to the Research 101 Training!
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Take care of yourself & ask for what you need Ask questions (some research lingo may be
unfamiliar and we are here to break it down) Step up, step back (draw out others’ ideas) Please try to stay off cell phone and social media Acknowledge everyone’s experience is different “One mic” (please mute phone when not
speaking) This discussion will be audio and video
recorded. We request your consent to being recorded.
Agreements
Your Presenters
Carole Wiedmeyer Self-employed
researcher 3 years with RA 20+ years market
research experience Past ArthritisPower
Patient Governor MBA Plays the flute
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Shilpa Venkatachalam GHLF Research Associate 8+ years research
experience 3 years experience in
health and policy research and fieldwork in U.S., India & Chad
PhD, MPH
Plays the violin
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Please be very brief – 30 seconds! (But feel free to add more in the chat box)
1. Your name2. Where you live3. Work or hobby you do4. Your interest in joining this group, including any
relevant social media experience
Introductions
You will have a basic understanding of:
Why researchers do things the way they do How to evaluate survey instruments How to understand and evaluate research reports and
presentations How to analyze, interpret, and talk about research
results NEW THIS SESSION: How social media can feed into
research
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Our Goals
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To develop best practices for using social media to raise research questions, engage open dialogue between patients and clinicians, disseminate evidence-based information and match patients with research opportunities.
Focus on spondyloarthritis (SpA, including psoriatic arthritis & ankylosing spondylitis) to pilot this new engagement approach.
Social Media Toolkit
1. Intro and research design2. Research instruments and data collection3. Data analysis, interpretation, and presentation
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The 1st of 3 Sessions
1. Evolving patient role in research
2. Research design
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Today’s Agenda
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1.Evolving Patient Role in Research
Two main factors: Patient-centered outcomes research (PCOR) Connected technology
Social media, mobile apps, connected health, online communities, citizen science
CreakyJoints offers opportunities to patients to get involved with research CJ studies involve researchers, academic institutions,
hospitals and health centers, and health system leaders
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Evolving Patient Role in Research
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Informed decision making
Based on personal characteristics
Comparative Effectiveness
Research (CER)
What can help me evaluate what is
best for me?
How can I work with clinicians
and health systems to help make the best
decisions about my health and
healthcare?
What is Patient-centered Outcomes Research (PCOR)?
Patient-reported outcomes (PROs)
A method to incorporate the voice of patients
rather than focusing on only clinical data
Patients have experiences that
are unique to them and this can move
clinical pursuit ahead
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Phase 1: Before
Identify topics
Literature Review
Design research Q’s
Develop profiles of study
participants
Phase 2: During
Develop surveys and other tools
Assist with recruitment
Assist with data analysis
Serve as a patient representative
Phase 3: After
Plan dissemination
activities
Identify partner organizations
Identify forums to share results
Advocacy activities
Patients Involved During All Phases of Research
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Shared decision making between doctors and patients
Impact of disease on quality of life Strategies to reduce fatigue Treatments during pregnancy Co-morbidities (Diabetes, cardiovascular, etc.)
What research topics are you most interested in? Why those?
Research Topics Prompted by Patients
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2. Research Design
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Where do research
questions come from?
DiagnosisWhat do I have?
EtiologyWhat caused
this?
PrognosisWhat does the future hold?
TreatmentWill ‘X’ make me get better?
PreventionCan doing ‘X’ prevent this
disease?
Q’s based on doctor-patient
experience
Research Questions
How well defined is the research question? How much is already (un)known on the topic? How easy (or hard) is it to acquire new data? What is the size of the study population? How much does the study population vary? How precise do the results need to be? How many resources are available to address the
research question? What are the researcher qualifications? How will respondent privacy be protected?
Research Design Considerations
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How do We Establish Cause?
Sometimes it all seems more like a spider web!
Cause Effect
Other Factors
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Does one cause the other? The cause must always precede the effect such that X
causes Y It must be a necessary condition without which the effect
cannot occur Flipping a switch makes the light come on (X causes Y)
Or are they correlated? Changes in X and Y occur simultaneously
Smoking behavior increases with alcohol consumption But smoking does not cause heavy alcohol consumption
Research often asks: What is the relationship between X and Y?Causation v. Correlation
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We may observe that people who
exercise more often have lower
levels of stressand conclude
that more exercise leads to decreased stress
levels
But is this necessarily true?
Does more exercise lead to
less stress?Or are there
other factors that are hidden & extraneous
factors
Could it be that people who are not in chronic
pain, haven’t lost a job, haven’t just had a baby tend to exercise more
and hence exhibit
decreased stress levels?
Research results might look like we have found a variable related to our desired outcome. But, it could really be due to an underlying issue.
Confounders
Variables = anything that you are trying to measure: object, characteristics, a feeling Independent variable (I) (often called “X”) – something that
can affect or be related to the key outcome (may be called the “intervention” in health research).
Dependent variable (D) (often called “Y”) – the key outcome of the study. It depends on other factors.
(Independent Variable) causes a change in (Dependent Variable) and it isn't possible that (Dependent Variable) could cause a change in (Independent Variable)
For example:You can manipulate this to see the effect on performance
Time spent practicing swimming (I) = affects performance (D)
Variables: The 2 types
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Populations and SamplesPopulation
Entire group under study
All the low birth weight infants in the countryNot practical to get information on every single infantMeasurements from populations are called parameters
Sample
The selected people or items
When we talk of samples we talk about statistics
A good sample should represent the population (How do we do this?)
Different methods for sampling exist
Statistical Significance: How likely is it that our results are due to chance, rather than to the intervention?
Does not have anything to do with importance
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Draw conclusions that can be “generalized” to the population under study
Why? To eliminate bias, personal choice Control the additional factors by eliminating bias in
order to establish cause and effect However, there are many issues with obtaining true
random samples
Random Sampling
• Availability of comprehensive sampling frame
• Non-response
Does chronic pain cause catastrophizing, or does catastrophizing cause chronic pain? Or both?
Cause and Effect - Example
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“Why are we doubted and our experience minimized? Why is our reaction to our pain shrugged off as a ‘poor coping style’? Why are we, by some members of the medical profession, expected to address the pain and the worries about it with the powers of our minds instead of painkillers?”- Lene Andersen, The Seated View
“Catastrophizing is positively related …to the reported severity of pain, affective distress, muscle and joint tenderness, pain-related disability, poor outcomes of pain treatment, and, potentially, to inflammatory disease activity … There appear to be multiple mechanisms by which catastrophizing exerts its harmful effects, from maladaptive influences on the social environment to direct amplification of the central nervous system's processing of pain.” - Arthritis Care & Research
Secondary Literature review of
previously conducted research Includes social media
review Useful first step to get
grounded in existing knowledge
Connect the dots to generate new insight
Lower cost Studies may not exist or be
of low quality www.cochrane.org
Primary Original research Involves data gathering Addresses unanswered
questions, or confirms/disputes existing research
Expands scope of knowledge
Expensive and time-consuming
Types of Research
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Qualitative
• Good for uncovering key issues to be explored in future research
• Good for probing “why”
• Good for understanding strength of relationships between independent and dependent variables
Types of Research
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• When resources allow, may be the best way to get full picture
• Qual-Quant-Qual
Quantitative
Mixed Method or Hybrid
Qualitative Quantitative
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Which concerns are most commonly shared?
Which methods do patients find the most/least successful for getting the answers they need?
What are the most common unanswered questions?
What kinds of concerns do newly diagnosed patients have?
How do they seek answers to those questions?
Example Hybrid Research Project:
What Kind of Information do Newly Diagnosed Patients Need?
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Research Quality
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Validity defines the strength of the final results and whether they can be regarded as accurately describing the real world
“Did we measure the right thing?”
Reliability describes the repeatability and consistency of a test
“Will the study yield the same results if I were to repeat the study under the same conditions?”
Essential Elements of Research Quality
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Bias = Systematic Error
Source: National Institutes of Healthhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917255/
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Questions or comments?
Next sessions: Session 2 – June 29th @ 5:30-7:00 p.m. Eastern
Research instruments and data collection
Session 3 – July 13th @ 5:30-7:00 p.m. Eastern Data analysis, interpretation, and presentation
Wrap-up
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Nothing About Us Without Us – the Promise of Patient-Centered Outcomes Research (14 mins): https://www.youtube.com/watch?v=czihj_l_Vs8
Advancing the science of patient input (Faster Cures): https://www.youtube.com/watch?v=Zsn_9EplBz8
‘Extra Credit’
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Living with Cancer: A Broken Covenant with Patients: http://well.blogs.nytimes.com/2016/01/15/living-with-
cancer-a-broken-covenant-with-patients/?mabReward=A2&moduleDetail=recommendations-0&action=click&contentCollection=Europe®ion=Footer&module=WhatsNext&version=WhatsNext&contentID=WhatsNext&src=recg&pgtype=article&_r=0
‘Extra Credit’
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Amazing story of patient with rare disorder doing research to get a diagnosis: https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation Podcast version:
http://www.thisamericanlife.org/radio-archives/episode/577/something-only-i-can-see
The Quantified Self video: https://www.youtube.com/watch?v=NP5okzCjrj0
‘Extra Credit’
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Developing good clinical questions http://www.ncbi.nlm.nih.gov/pmc/articles/PMC438601
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Correlation and causality: https://www.youtube.com/watch?v=8B271L3NtAw https://www.youtube.com/watch?v=ROpbdO-gRUo
How to tell good studies from bad: http://fivethirtyeight.com/features/how-to-tell-good-
studies-from-bad-bet-on-them/?ex_cid=538fb
‘Extra Credit’
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Statistical significance video: https://www.youtube.com/watch?v=jLFeqQxGtOc
Causation vs. correlation video: https://www.youtube.com/watch?v=8B271L3NtAw
Catastrophizing http://theseatedview.blogspot.ca/2012/07/catastrophizi
ng-and-good-doctoring.html http://onlinelibrary.wiley.com/doi/10.1002/art.21865/fu
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‘Extra Credit’
Online communities www.PatientsLikeMe.com
Connected health Video: Connected health care video:
https://www.youtube.com/watch?v=AhOgx0bIoq0 Citizen science
Video:https://www.youtube.com/watch?v=-OxO0eOnntE
‘Extra Credit’
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