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

ll

‘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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