Research 101: The Nuts and Bolts of Research – Empowering Autistic Individuals
Research 101
The Nuts and Bolts of Research
A course for autistic people, by Jackie Ryan & Sue Fletcher-Watson
Research 101
Day One: Informed Consumer
Welcome & Why are we all here?
•
The vision behind the course
•
To empower autistic people to engage more effectively with the research that
affects them
•
To ensure autistic people know their rights as participants
•
To facilitate participatory working by moving towards a shared knowledge
base
•
To demystify the research establishment
•
What we did to plan it
•
Chatted to my autistic mentors
•
Sue and Jackie fortuitously met!
•
Surveyed autistic people within / outside research and non-autistic
researchers on
content
and
delivery
What are we going to do?
•
What’s coming up today?
•
What does “informed consumer” mean?
•
Hand out packs
•
Notebook and pen
•
Detailed schedule & handouts
•
Lanyards with name card & coloured interaction stickers [write up what these
mean]
•
Bowl of fidgets
•
Talk about how to participate, ask questions etc.
•
Texts, notecards, raising a hand
•
Work alone, as a group, in pairs
Glossary
•
We will create it as we go along
•
if you hear a word or an acronym you don’t know and want to know
•
pass a card to Jackie
•
Text Jackie
•
Raise your hand to ask
•
We will write definitions up on the wall as we go, and you can add
them to your notebooks
Ground Rules
•
Please be respectful and polite, even when talking about researchers who
aren’t present
•
Use identity-first language, except when not your personal preference
•
Everyone has permission to stim
•
Quiet spaces: hallway outside, Sue’s 5
th
floor office,
•
Toilets: ground floor, second floor accessible
•
Fire alarms and fire exits: none planned today, two staircases
•
Talk about catering: what are we eating and when?
•
When to ask questions: interrupt for a point of clarification, otherwise wait
for discussion sections
•
Check slide design and contrast levels
•
Is there anything else we need?
Who are we?
•
Introduce Jackie
•
pronouns, background, neurotype
•
Sue, as above
•
Billie, as above
•
Rachael, as above
•
Shereen, as above
Who are you?
•
Invite people to introduce themselves if they want to
•
Please aim to take just 1-2 minutes each
•
Your name
•
Your pronouns
•
Your background – experience with research, reason to be on the course
•
Your neurotype
Day One Schedule – Informed Consumers
9:00am:
The Basics
10:20am:
Break
10:50am:
Literature reviews and Methods 101, panel
12:10pm:
Lunch
12:50pm:
Statistics, lecture and activity
2:10pm:
Break
2:40pm:
Reviewing Research Outputs, lecture & activity
4.00pm:
feedback forms & goodbye
Any questions?
1.1 Learning Objective
to gain a general understanding of the research
cycle, key terms, and a framework for evaluating
the quality of research.
What is “research”?
•
Finding out new things in a systematic way
•
Creating new knowledge by
•
Seeking existing information and combining it in new ways
•
Creating brand new information
•
Hallmarks
•
Replicable (you can copy it)
•
Transparent (you can copy it)
•
Systematic (you can copy it)
Examples of research
•
How do teachers support autistic pupils in school?
•
Review governmental and school policy and training documents to determine
hallmarks of ‘correct’ support
•
Review academic literature on studies that have interviewed teachers, to
extract common themes
•
Observe teachers directly and analyse their behaviour
•
Send a survey to autistic pupils
•
Analyse linked school records and health records to look at attainment in
pupils with / without an autism diagnosis
•
Design a new way of supporting autistic pupils and evaluate it
The difference between research and practice
Research
•
Groups & Averages
•
Ideal world (?)
•
Assumptions
•
Replicable
•
Generalisations
•
Recommendations
•
Peer reviewed
Practice
•
Individuals & Specifics
•
Real world
•
Constraints
•
Bespoke
•
Targets
•
Solutions
•
Inspected
The research- practice gap
A typical project timeline
A typical PhD project
•
Review the literature
•
what do we already know?
•
Refine questions and hypotheses
•
Design the study
•
Best measures
•
Budget, resources
•
Pilot the method
•
Collect data
•
Design and perform analysis
•
Write up thesis
•
Review the literature
•
Study 1: practitioner survey
•
Design
•
Ethics
•
Data
•
Analysis
•
Publication
•
Study 2: development of method
•
Study 3: outcome-focused
•
Write up thesis
A larger scale research timeline
What
research
gets done?
Who does the research?
•
Connecting expertise, literature and resource
•
Pressure to publish, and publish “well”
•
Demonstrable expertise
•
The Research Excellence Framework
•
6-yearly evaluation of research “quality” and quantity
•
Dictates government block grants to Universities
•
Big influence on employment
What are research careers like?
What are research careers like?
Dr X
1.
PhD graduation in 2017
2.
6 month RA job with former supervisor, part time
+ some teaching work
3.
2 year postdoc, 80% FTE (i.e. four days per week)
+ 4 months 10% FTE on a big grant helping get set-up
+ 10 months 10% FTE on her own “seedcorn” grant
4.
10 month Fellowship, 60% FTE
+ 9 month 20% FTE on her own “seedcorn” grant
The researcher experience
•
Precarious contracts
•
Running a project while applying for the next one
•
Disseminating the last project while launching the next one
•
High expectations: papers, conference presentations,
•
Low grant success rates
•
Stress and anxiety
•
Student-supervisor or collaborative relationships
Why is this a problem?
•
Research ideas not followed through
•
Participatory working easily disregarded
•
Career anxiety shifts focus onto CV targets (and away from quality)
•
Academic ill health drains the system
•
Workload…
NDIQ: Diversity in
Social Intelligence
Ideas, proposals
Dissemination, implementation
Active, data collection
getting closer to project completion
more worth talking about
MRB clinical trial
Residential care
for older adults
Autism &
bilingualism:
longitudinal
Ideas, proposals
Dissemination, implementation
Active, data collection
Maggi: autism,
tech, play
getting closer to project completion
more worth talking about
Shereen: autism,
bilingualism, EF
Mihaela: autism,
tech , pretend
play
Billie: autism,
bilingualism,
perspective
taking
Mark
Kabie: autistic
parents
Ruth: autism,
instrument
learning
Ideas, proposals
Dissemination, implementation
Active, data collection
getting closer to project completion
more worth talking about
I-SOCIALISE
BETA: building
evidence for tech
in autism
Eye-contact
project
NESTA
diagnosis
app
ADOS
consortium
Ideas, proposals
Dissemination, implementation
Active, data collection
Autistic staff
and students
External
collaborator
guidance
getting closer to project completion
more worth talking about
Learning
about
research
Radical No
Early Life
network
Processing ET
data: bottom up
vs. top down
Teaching
neurodiversity in
primary schools
Ideas, proposals
Dissemination, implementation
Active, data collection
getting closer to project completion
more worth talking about
SMRC research
programme
Smooth Sailing
intervention
Autism
language
Survey
Peer
support
projects
ADOS
consortium
NDIQ: Diversity in
Social Intelligence
Processing ET
data: bottom up
vs. top down
Teaching
neurodiversity in
primary schools
Ideas, proposals
Dissemination, implementation
Active, data collection
Autistic staff
and students
External
collaborator
guidance
Maggi: autism,
tech, play
getting closer to project completion
more worth talking about
Shereen: autism,
bilingualism, EF
Mihaela: autism,
tech , pretend
play
Billie: autism,
bilingualism,
perspective
taking
MRB clinical trial
I-SOCIALISE
Residential care
for older adults
Learning
about
research
BETA: building
evidence for tech
in autism
Eye-contact
project
SMRC research
programme
Smooth Sailing
intervention
Mark
Radical No
Early Life
network
Autism &
bilingualism:
longitudinal
Kabie: autistic
parents
Ruth: autism,
instrument
learning
Autism
language
Survey
NESTA
diagnosis
app
Peer
support
projects
Ideas, proposals
Dissemination, implementation
Active, data collection
Professional
services CSP
Lorna: stress,
attention,
prematurity
getting closer to project completion
more worth talking about
Sinéad: gesture,
language, SES,
prematurity
Bethan: social
cognition,
prematurity
Pathfinder: MH
data science
SMRC research
programme
TEBC: preterm
infant follow-up
Alexandra
SYNGAP deletion:
characterisation
WT translational
neuroscience
PhD
Would you be interested to see my CV?
•
If so, click out and show it
Intersectionality in Universities
•
Like any high-pressure environment,
marginalized and disadvantaged groups
are squeezed out of academia
•
We have problems with
•
Gender pay gap and gender balance in top
roles
•
Additional BME pay gap
•
Exclusion / hidden status of LGBTQ+
groups, especially in STEM
The UCU strike as an example
•
15% gender pay gap
•
Casualisation of the work force
•
20% drop in salaries in real terms – comparison with other industries
•
Average working week >> 35 hours
•
Pensions: increasing contributions £40k, decreasing payout £200k
What does all this mean for
autism research?
discussion
Lessons for Informed Consumers
•
Research is heavily constrained
•
By time
•
By funding
•
By expertise
•
By barriers
•
Research is slow, and often behind the curve
•
Research is good at making generalized statements, not specific
recommendations
Take-home messages
•
Hold the supervisor accountable, not the student
•
Look at the last as well as the first author (in medical research)
•
We look powerful, but we feel vulnerable
•
Not everything we do is a real choice
Any questions?
Time for a break
Literature Reviews and Methods
101
1.2 Learning Objective
To gain a general understanding of the quantitative and
qualitative research paradigms, how/why they are
chosen, and the realities of conducting research.
Panel discussion, with script by Jackie
Any questions?
Time for lunch
Statistics
1.3 Learning Objective
To have a general understanding of statistics and be
able to interpret statistics in a research paper.
Any questions?
Time for a break
Research Outputs
1.4 Learning Objective
To be able to discern quality and relevance of published
research both in academic journals and as reported by
the media.
Any questions?
Thank you
•
Tomorrow we will talk about
•
Your rights as a participant
•
Understanding ethics in research
•
Understanding informed consent
•
Recruitment and (more) timelines of research
•
Data management and GDPR
Any questions?
Research 101
Day Two: Empowered Participant
Welcome & Why are we all here?
•
The vision behind the course
•
To empower autistic people to engage more effectively with the research that
affects them
•
To ensure autistic people know their rights as participants
•
To facilitate participatory working by moving towards a shared knowledge
base
•
To demystify the research establishment
•
What we did to plan it
•
Chatted to my autistic mentors
•
Sue and Jackie fortuitously met!
•
Surveyed autistic people within / outside research and non-autistic
researchers on
content
and
delivery
What are we going to do?
•
What’s coming up today?
•
What does “empowered participant” mean?
•
Hand out packs
•
Notebook and pen
•
Detailed schedule & handouts
•
Lanyards with name card & coloured interaction stickers
•
Bowl of fidgets
•
Talk about how to participate, ask questions etc.
•
Texts, notecards, raising a hand
•
Work alone, as a group, in pairs
Glossary
•
We will create it as we go along
•
if you hear a word or an acronym you don’t know and want to know
•
pass a card to Jackie
•
Text Jackie
•
Raise your hand to ask
•
We will write definitions up on the wall as we go, and you can add
them to your notebooks
Ground Rules
•
Please be respectful and polite, even when talking about researchers who
aren’t present
•
Use identity-first language, except when not your personal preference
•
Everyone has permission to stim
•
Quiet spaces: hallway outside, Sue’s 5
th
floor office,
•
Toilets: ground floor, second floor accessible
•
Fire alarms and fire exits: none planned today, two staircases
•
Talk about catering: what are we eating and when?
•
When to ask questions: interrupt for a point of clarification, otherwise wait
for discussion sections
•
Check slide design and contrast levels
•
Is there anything else we need?
Who are we?
•
Introduce Jackie
•
pronouns, background, neurotype
•
Sue, as above
•
Gill, as above
Who are you?
•
Invite people to introduce themselves if they want to
•
Please aim to take just 1-2 minutes each
•
Your name
•
Your pronouns
•
Your background – experience with research, reason to be on the course
•
Your neurotype
Day Two Schedule – Empowered Participants
9:00am – Introduction
9.15am – Ethics
10:20am – Break
10:50am – Ethics Workshop
12:10pm – Lunch
12:50pm – Recruitment & Timelines
2:10pm – Break
2:40pm – Data Management
4.00pm – feedback forms and goodbye
Ethics
2.1 Learning Objective
To gain an understanding of your rights as a participant
and the researcher’s obligation to respect your rights
and minimize risk to you.
Any questions?
Time for a break
Ethics workshop
2.2 Learning Objective
To enhance understanding of your rights as a
participant.
Any questions?
Time for lunch
Recruitment and Timelines
2.3 Learning Objective
To gain an understanding of how and why researchers
set inclusion/exclusion criteria, and common barriers to
recruitment.
Some definitions
•
Recruitment
•
Finding people who can find people who want to take part in your study
•
Finding people who want to take part in your study
•
Inviting them to take part
•
Taking informed consent
•
Inclusion criteria
•
Attributes that people taking part in your work have to have e.g. “over 16
years old”
•
Exclusion criteria
•
Attributes that people taking part in your work should not have e.g.
“diagnosis of social anxiety”
Examples of inclusion / exclusion criteria
Inclusion
•
Diagnostic status
•
IQ
Exclusion
•
Co-occurring diagnoses
•
Non-English-speaking
•
Age
Reasons for inclusion / exclusion criteria
•
Available measures – e.g. age range
•
Safety of participants – e.g. co-occurring diagnoses
•
Informed consent – e.g. intellectual disability
•
Minimising risk – e.g. specific diagnosis
•
Maximising chances of statistical significance – e.g. narrow age range
•
Resources – e.g. budget, networks
•
Theoretical models – e.g. bilingual people
Problems with inclusion / exclusion criteria
•
Looking under the lamp-post
Problems with inclusion / exclusion criteria
•
Looking under the lamp-post
•
Reduced generalisability
•
Dependent on future researchers to pick up where we left off
•
Remember what we said about PhDs and research careers?
•
Frustration for the community
•
Underpinned by a patronising / disempowering narrative
•
(or are they??)
•
Example of exclusion of pregnant women from clinical trials
Worked example…
You want to find out
What factors shape whether an autistic person is
satisfied with the quality of their mental health care?
Q1: What factors might be relevant?
Q2: How will you measure them?
Q3: Who are you going to recruit for this study?
Q4: what are your inclusion / exclusion criteria?
Factors to consider
•
There are many potential predictors
•
You want data that can change the way services are provided in the
NHS
•
Clinical pathways are very different for different mental health
conditions
•
Clinical pathways are very different between Scotland and the rest of
the UK
•
If people self-identify as autistic, their mental health practitioner
might not know / believe them
Factors influencing recruitment
•
Inclusion / exclusion criteria
•
Gatekeepers
•
Ethical approval
•
Community identity and coherence
•
Language
•
Funding
•
Time
•
Researcher networks and confidence
Sample recruitment pathway & timeline
Sample recruitment pathway & timeline
Designing your recruitment pathway
You want to find out
What factors shape whether an autistic person is
satisfied with the quality of their mental health care?
You’re recruiting….
Q1: How will you find them?
Q2: What information do they need and when?
Q3: What reimbursement will you offer?
A note on payment
•
Participant rates vs. consultant rates
•
Ethical panel concerns re. consent
•
Paying with gift vouchers
•
Paying in cash
•
Paying direct to your bank account
•
Consequences for benefits
Any questions?
Time for a break
Data Management
2.4 Learning Objective
To gain an understanding of what researchers can and
cannot do with the data they collect and how they must
ensure its protection.
What are data?
•
Personal information: name, date of birth, address, email
•
Interview recordings and transcripts
•
Focus group notes
•
Questionnaire responses
•
Saliva samples, and derived DNA
•
Eye-movement patterns
•
Fitbit recordings
•
Your school grades, or NHS prescription records
Identifiable data:
•
Personal information: name, date of birth, address, email
•
Interview recordings and transcripts??
•
Focus group notes
•
Questionnaire responses
•
Saliva samples, and derived DNA
•
Eye-movement patterns
•
Fitbit recordings??
•
Your school grades, or NHS prescription records
Routine data
•
Personal information: name, date of birth, address, email
•
Interview recordings and transcripts
•
Focus group notes
•
Questionnaire responses
•
Saliva samples, and derived DNA
•
Eye-movement patterns
•
Fitbit recordings
•
You school grades, or NHS prescription records
What is GDPR?
•
The General Data Protection Regulation
•
Consent-based data
•
Research normally falls under this bracket
•
Limited impact of GDPR on research
•
Legitimate-interest based data
•
Student applications
•
Contact details of other research teams
•
Changes for researchers
•
Mailing lists
•
Fundraising and marketing
What happens to your data?
What happens to your data?
Where are your data?
Let’s have a look at some data!
https://datashare.is.ed.ac.uk/handle/10283/3194
https://datashare.is.ed.ac.uk/handle/10283/3259
Key considerations: managing new data
•
Data Protection Impact Assessment
•
Informed consent
•
INFORMED
•
CONSENT
•
Who is allowed to have access?
•
Reducing risks of data breaches
•
Blinded researchers
•
Secure transfer from data collection to data processing location
•
Effective pseudonymisation
•
Physical storage solutions (e.g. where are the filing cabinet keys?)
•
Digital storage solutions
Key considerations: processing new data
•
Coding
•
Turning words into numbers
•
Counting things (frequencies)
•
Identifying themes
•
Combing scores into indexes (Cronbach’s alpha)
•
Identifying and removing outliers?
•
Imputation = i.e. what to do with empty cells
•
Storage (data begets data)
•
Version control
•
Transparency and accurate recording
Key considerations: accessing routine /
banked data
•
Data Protection Impact Assessment
•
Public Benefit and Privacy Panel
•
Specific stakeholder opinion
•
Complexity of drawing conclusions from people who respond to surveys /
take part in focus groups
•
Data quality
•
Data relevance
•
Understanding what the data represent
•
Example of coroner’s reports
Key considerations: linking data
•
Data Protection Impact Assessment
•
Public Benefit and Privacy Panel
•
Specific stakeholder opinion
•
Complexity of drawing conclusions from people who respond to surveys /
take part in focus groups
•
Mechanisms for connecting data types
•
Safe Haven rules
•
Maximum sub-group sizes
Key considerations: sharing data
•
Permission
•
Anonymisation procedure
•
Meta-data
•
Data dictionary
•
Access rules and availability
•
Likelihood of data being useful to anyone
•
Responding to queries about the data
Any questions?
Thank you
•
On Monday we will talk about
•
Being a collaborator in a research project
•
How research ideas are generated
•
How research is funded
•
The research process
•
How research is shared, and put into action
•
How you can connect with researchers
Any questions?
Research 101
Day Three: Effective Collaborator
Welcome & Why are we all here?
•
The vision behind the course
•
To empower autistic people to engage more effectively with the research that
affects them
•
To ensure autistic people know their rights as participants
•
To facilitate participatory working by moving towards a shared knowledge
base
•
To demystify the research establishment
•
What we did to plan it
•
Chatted to my autistic mentors
•
Sue and Jackie fortuitously met!
•
Surveyed autistic people within / outside research and non-autistic
researchers on
content
and
delivery
What are we going to do?
•
What’s coming up today?
•
What does “effective collaborator” mean?
•
Hand out packs
•
Notebook and pen
•
Detailed schedule & handouts
•
Lanyards with name card & coloured interaction stickers
•
Bowl of fidgets
•
Talk about how to participate, ask questions etc.
•
Texts, notecards, raising a hand
•
Work alone, as a group, in pairs
Glossary
•
We will create it as we go along
•
if you hear a word or an acronym you don’t know and want to know
•
pass a card to Jackie
•
Text Jackie
•
Raise your hand to ask
•
We will write definitions up on the wall as we go, and you can add
them to your notebooks
Ground Rules
•
Please be respectful and polite, even when talking about researchers who
aren’t present
•
Use identity-first language, except when not your personal preference
•
Everyone has permission to stim
•
Quiet spaces: hallway outside, Sue’s 5
th
floor office,
•
Toilets: ground floor, second floor accessible
•
Fire alarms and fire exits: none planned today, two staircases
•
Talk about catering: what are we eating and when?
•
When to ask questions: interrupt for a point of clarification, otherwise wait
for discussion sections
•
Check slide design and contrast levels
•
Is there anything else we need?
Who are we?
•
Introduce Jackie
•
pronouns, background, neurotype
•
Sue, as above
•
Colin, as above
•
Freya, as above
•
Sonny, as above
•
Catherine, as above
Who are you?
•
Invite people to introduce themselves if they want to
•
Please aim to take just 1-2 minutes each
•
Your name
•
Your pronouns
•
Your background – experience with research, reason to be on the course
•
Your neurotype
Day Three Schedule – Effective Collaborators
9:00am – Introduction
9.15am – Being a Collaborator
10:20am – Break
10:50am – Ideas, Funding and Research Questions
12:10pm – Lunch
12:50pm – Research Process
2:10pm – Break
2:40pm – Outcomes, Publications and Implementation
3.30pm – Next steps, connecting with Researchers
4.00pm – feedback forms and goodbye
Being a Collaborator
3.1 Learning Objective
To gain understanding of working as a team, including
the skills of working together, setting mutual
expectations, conflict resolution techniques.
To explore excellent examples of research partnerships.
Any questions?
Time for a break
Ideas, Funding and Research
Questions
3.2 Learning Objective
To gain an understanding of the process from idea, to
research question, to getting funding including barriers
to funding.
Where do research ideas come from?
•
Personal experience
•
Talking to friends and colleagues
•
Reading the literature – especially the final sections
•
Going to conferences
•
Funding calls
•
Donor priorities
•
Priority-setting exercises
A new
project:
worked
example
Your project: let’s write a grant!
•
We’re going to work through the decisions you need to make to write
a grant together
•
You can work alone or in a pair
•
You can share your ideas or stay quiet
•
I will do the process as well, on the whiteboard / flipchart
Part One, before lunch: writing your proposal
Part Two, after lunch: doing the project
Shall we have a look at some grant proposals?
•
Application form
•
Basic applicant details, address etc
•
Summary
•
Lay summary
•
beneficiaries
•
Budget
•
Attachments
•
Detailed proposal
•
Justification of resources
•
Impact statement
What’s your research idea?
•
Write down
•
Some keywords
•
A topic area
•
A group of people you want to
study
•
A life experience you want to
know more about
•
A method you like
•
Things to think about
•
What’s been done before (if in
doubt, assume nothing for today!)
•
What skills do you have?
•
What resources do you have?
money, time, tools
•
What does your supervisor / team
know how to do?
•
What measures are available?
watch out for the lamp-post…
Building up your idea
•
Try to formulate it into a question, or tight group of questions
•
Try to write down a hypothesis – a prediction about what you expect
•
Are you prepared for the opposite to be the case?
Prediction: stigma reduces willingness to share data
Identifying a method
•
Are you going to collect data from people, or other sources of
information?
•
Do you want to adopt a qualitative or quantitative paradigm – or
mixed methods? Why?
•
Make a list of
•
Participants: who they are, how many of them
•
Materials: what do you need (pen, paper, Dictaphone, IQ test, MRI scanner)
•
Procedure: what will happen (to participants), what’s the process?
•
Design:
this is more technical, and we can discuss this part
Identifying a participatory model
•
Who do you need to guide you?
•
Where will you find them?
•
What model of participatory working will you adopt?
•
Participatory working examples:
•
Consultation
•
Collaboration
•
Partnership
•
Citizen science
•
Leadership ✅ ✅ ✅
Making a budget
•
How long will the project take?
•
What staff are needed and how much will they be paid?
•
Include your participatory team
•
Do you need to pay student fees as well as salary / stipend
•
How about some expert advisors?
•
What equipment do you need to buy?
•
What consumables do you need to buy?
•
How much will it cost to share your research?
•
How much will it cost to implement your research?
A grant budget
Funder remit
•
ESRC New Investigator Scheme
•
https://esrc.ukri.org/funding/funding-opportunities/new-investigator-grants/
•
Nuffield Foundation strategic fund
•
https://www.nuffieldfoundation.org/strategic-fund-including-seed-corn-
funding
Doing the application
•
Costings from a finance team, including FEC
•
Internal competition
•
Collaborators, including non-academic partners
•
Creating an online account
•
Multiple stages? Interview?
•
Signatures
Any questions?
Time for lunch
The Research Process
3.3 Learning Objective
To understand the research process, opportunities
within the process for collaboration, and the steps
within the process.
Yay, you got funded!
What’s next?
Recruiting your staff
•
You need to write a job description
•
Qualifications
•
Essential / desirable
•
Knowledge and Skills
•
Experience
•
Personal characteristics
•
Finding them an office, desk, computer…
•
Anything else?
Getting started
Reviewing the literature
•
Has anything changed since you applied?
•
Do you have a student / employee?
•
What do they want to achieve from the project?
•
Do you need to adjust your plans at all?
•
Agreeing working practices
•
Reasonable adjustments
Let’s assume this is all fine… and talk about Gantt charts!!
Ethics
•
Write your ethics form
•
What are the risks?
•
How will you minimize them?
•
How will you secure people’s data?
•
What will you put in your information sheet?
•
What will you put in your consent form?
•
How will these be shared with participants?
•
When? Will they have time to reflect and a chance to ask questions?
Data management
•
Where are you when the data are collected?
•
In someone’s home, in a school, in “the lab”?
•
What tools are used to collect the data?
•
How secure are they?
•
Are they “GDPR compliant”?
•
How will you get the data from where it is collected to where it is
analysed?
•
How will you store the data?
•
Digital vs paper
•
Who will have access and how?
Recruitment Pathway
•
Who are you trying to recruit?
•
Where can you find them?
•
Who are the gatekeepers?
•
How fast do you expect to recruit? (how many per month / week?)
•
Are there any “local” permissions that you need?
•
How will you correspond with your potential participants?
•
How will you look after their personal information (email, name)?
•
How will you screen them for eligibility?
Analysis plan
•
What kind of data are you expecting to get?
•
Numbers?
•
Audio or video recordings?
•
Text responses?
•
What processing is needed?
•
What kind of analysis do you plan to do?
•
Thematic?
•
Comparing two groups?
•
Comparing one group at two different time points?
Drawing Conclusions
•
Write down what you expect your data to show in an ideal world
•
Try to make it factual
e.g. older autistic people report having fewer symptoms of anxiety than
young autistic people
•
How can you minimize bias?
•
What’s the difference between
what you found
and
what it means
?
•
What do you want people to know about what you found?
Open
Science
•
A set of
principles
for making
science
more
transparent,
and
replicable
Open
Science
•
Publish a protocol
•
Publish a pre-print
•
Publish the data
•
Publish the methods
•
Publish the paper
no
matter what you find
•
Talk honestly about
what you did
Problem Solving
•
Your PhD student is experiencing mental health problems, but doesn’t
want an interruption
•
Your community collaborator disagrees with an academic project
partner
•
Your ethics committee wants parents to consent on behalf of
”vulnerable adults”
•
Your video camera breaks halfway through data collection
•
Your lead researcher takes parental leave
•
You accidentally send an email to all participants in CC instead of BCC
Congratulations!
You did a research study!
Any questions?
Time for a break
Outcomes, Publications and
Implementation
3.4 Learning Objective
To gain an understanding of where and how research
gets published, who or what determines authorship,
how does research become practice or policy.
Any questions?
Time for a break
Next Steps, Connecting with
Researchers, and Wrap-up
3.5 Learning Objective
To learn practical ways to connect with researchers to
become collaborators
So you want to be involved in research?
•
You don’t have to do your own research to be involved
meaningfully
in research
•
If you want to do your OWN independent research
•
Make a clear plan including a budget and a timeline
•
Link with an establishment who can provide support
e.g. insurance
•
Know what you want the end result to be in terms of impact and personal
development
So you want to be involved in research?
•
You don’t have to do your own research to be involved
meaningfully
in research
•
If you want to do research in higher education
•
Look for degree courses you like: normally Masters, then PhD
•
Think carefully about funding sources
•
Approach a supervisor with: CV; brief idea / topic area; knowledge of what
they’re doing now; clear timeline and objective
•
Know what you want the end result to be in terms of impact and personal
development
So you want to be involved in research?
•
If you want to do research with academics
•
Look for research you like – who wrote it?
•
Look for researchers you like
•
Early career people might be best?
•
Think carefully about what you can afford to contribute
•
Approach a collaborator with: brief idea / topic area; knowledge of what
they’re doing now; clear proposal / objective
•
Know what you want the end result to be in terms of impact and personal
development
Practical Tips
•
Conferences are great
•
Set up a chat in a coffee break or ask a question after a talk
•
Twitter is great
•
Share and comment on their work in a constructive way
•
Read about participatory working
•
Lots of people don’t do it because they’re scared / don’t know how / don’t
know why it’s relevant to them
•
Tell them you did this course!
•
Busyness rules most academics’ lives
•
Ask what time of year is best
•
Be prepared to play a long game
What are we doing next?
•
Publishing all our slides online
•
Integrating the slides from our guest speakers
•
Integrating the activities, panel scripts, handouts
•
Writing up and sharing your feedback in a blog post
•
Disseminating the course, including via Autistica
•
Running this course again one day?
•
Making it available for other communities
•
Dementia buddies
•
Translational Neuroscience PhD
Any questions?
Thank you so much for coming!
This course, led by Jackie Ryan & Sue Fletcher-Watson, aims to empower autistic individuals to engage effectively with research that impacts them. It focuses on educating participants about their rights, fostering shared knowledge, and demystifying research processes. The course includes activities like defining terms, setting ground rules, and providing resources for informed consumption.
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Presentation Transcript
Research 101 The Nuts and Bolts of Research A course for autistic people, by Jackie Ryan & Sue Fletcher-Watson
Research 101 Day One: Informed Consumer
Welcome & Why are we all here? The vision behind the course To empower autistic people to engage more effectively with the research that affects them To ensure autistic people know their rights as participants To facilitate participatory working by moving towards a shared knowledge base To demystify the research establishment What we did to plan it Chatted to my autistic mentors Sue and Jackie fortuitously met! Surveyed autistic people within / outside research and non-autistic researchers on content and delivery
What are we going to do? What s coming up today? What does informed consumer mean? Hand out packs Notebook and pen Detailed schedule & handouts Lanyards with name card & coloured interaction stickers [write up what these mean] Bowl of fidgets Talk about how to participate, ask questions etc. Texts, notecards, raising a hand Work alone, as a group, in pairs
Glossary We will create it as we go along if you hear a word or an acronym you don t know and want to know pass a card to Jackie Text Jackie Raise your hand to ask We will write definitions up on the wall as we go, and you can add them to your notebooks
Ground Rules Please be respectful and polite, even when talking about researchers who aren t present Use identity-first language, except when not your personal preference Everyone has permission to stim Quiet spaces: hallway outside, Sue s 5thfloor office, Toilets: ground floor, second floor accessible Fire alarms and fire exits: none planned today, two staircases Talk about catering: what are we eating and when? When to ask questions: interrupt for a point of clarification, otherwise wait for discussion sections Check slide design and contrast levels Is there anything else we need?
Who are we? Introduce Jackie pronouns, background, neurotype Sue, as above Billie, as above Rachael, as above Shereen, as above
Who are you? Invite people to introduce themselves if they want to Please aim to take just 1-2 minutes each Your name Your pronouns Your background experience with research, reason to be on the course Your neurotype
Day One Schedule Informed Consumers 9:00am: 10:20am: Break 10:50am: Literature reviews and Methods 101, panel 12:10pm: Lunch 12:50pm: Statistics, lecture and activity 2:10pm: Break 2:40pm: Reviewing Research Outputs, lecture & activity 4.00pm: feedback forms & goodbye The Basics
1.1 Learning Objective to gain a general understanding of the research cycle, key terms, and a framework for evaluating the quality of research.
What is research? Finding out new things in a systematic way Creating new knowledge by Seeking existing information and combining it in new ways Creating brand new information Hallmarks Replicable (you can copy it) Transparent (you can copy it) Systematic (you can copy it)
Examples of research How do teachers support autistic pupils in school? Review governmental and school policy and training documents to determine hallmarks of correct support Review academic literature on studies that have interviewed teachers, to extract common themes Observe teachers directly and analyse their behaviour Send a survey to autistic pupils Analyse linked school records and health records to look at attainment in pupils with / without an autism diagnosis Design a new way of supporting autistic pupils and evaluate it
The difference between research and practice Research Groups & Averages Ideal world (?) Assumptions Replicable Generalisations Recommendations Peer reviewed Practice Individuals & Specifics Real world Constraints Bespoke Targets Solutions Inspected
The research- practice gap Funded research project Data collection and analysis Research publishing articles, going to conferences media, public lectures Disseminate training delivery workable products Implement
A typical project timeline review, design, ethics: 3-6 months Idea: 1 month - 10 years application: 3-9 months recruitment, set- up: 3 months implementation: -6 months publication: 6-12 months analysis: 1-10 months data collection: 3-36 months
A typical PhD project Review the literature what do we already know? Refine questions and hypotheses Design the study Best measures Budget, resources Pilot the method Collect data Design and perform analysis Write up thesis Review the literature Study 1: practitioner survey Design Ethics Data Analysis Publication Study 2: development of method Study 3: outcome-focused Write up thesis
A larger scale research timeline Intervention design Pilot trial publication Basic findings 10 years 1-2 years 3 years 1 year publication clinical trial seek funding implementation??? 1 year 3 years 4 years
Funder strategy What research gets done? Demonstrable need / open question Applicant expertise Available resources
Who does the research? Connecting expertise, literature and resource Pressure to publish, and publish well Demonstrable expertise The Research Excellence Framework 6-yearly evaluation of research quality and quantity Dictates government block grants to Universities Big influence on employment
What are research careers like? 6 month RA job, maternity leave Masters degree PhD Viva & postdoc 2003-2004 2004-2007 2008 2009-2010 Chancellor's Fellowship Fellowship, maternity leave Chancellor's Fellowship 2014- 2019 Permanent job 2019 2013-2014 2010-2013
What are research careers like? Dr X 1. PhD graduation in 2017 2. 6 month RA job with former supervisor, part time + some teaching work 3. 2 year postdoc, 80% FTE (i.e. four days per week) + 4 months 10% FTE on a big grant helping get set-up + 10 months 10% FTE on her own seedcorn grant 4. 10 month Fellowship, 60% FTE + 9 month 20% FTE on her own seedcorn grant
The researcher experience Precarious contracts Running a project while applying for the next one Disseminating the last project while launching the next one High expectations: papers, conference presentations, Low grant success rates Stress and anxiety Student-supervisor or collaborative relationships
Why is this a problem? Research ideas not followed through Participatory working easily disregarded Career anxiety shifts focus onto CV targets (and away from quality) Academic ill health drains the system Workload
Ideas, proposals Dissemination, implementation Active, data collection NDIQ: Diversity in Social Intelligence MRB clinical trial more worth talking about Residential care for older adults Autism & bilingualism: longitudinal getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection more worth talking about Mark Kabie: autistic parents Shereen: autism, bilingualism, EF Billie: autism, bilingualism, perspective taking Mihaela: autism, tech , pretend play Ruth: autism, instrument learning Maggi: autism, tech, play getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection Eye-contact project BETA: building evidence for tech in autism more worth talking about NESTA diagnosis app I-SOCIALISE getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection Learning about research more worth talking about External collaborator guidance Autistic staff and students Radical No ADOS consortium Early Life network getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection Teaching neurodiversity in primary schools Processing ET data: bottom up vs. top down Autism language Survey more worth talking about Smooth Sailing intervention SMRC research programme Peer support projects getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection Teaching neurodiversity in primary schools Learning about research NDIQ: Diversity in Social Intelligence Eye-contact project MRB clinical trial Processing ET data: bottom up vs. top down BETA: building evidence for tech in autism Autism language Survey more worth talking about NESTA diagnosis app I-SOCIALISE External collaborator guidance Smooth Sailing intervention Residential care for older adults Mark Autistic staff and students Autism & bilingualism: longitudinal SMRC research programme Peer support projects Radical No Kabie: autistic parents Shereen: autism, bilingualism, EF ADOS consortium Early Life network Billie: autism, bilingualism, perspective taking Mihaela: autism, tech , pretend play Ruth: autism, instrument learning Maggi: autism, tech, play getting closer to project completion
Ideas, proposals Dissemination, implementation Active, data collection WT translational neuroscience PhD Pathfinder: MH data science more worth talking about TEBC: preterm infant follow-up SMRC research programme Professional services CSP SYNGAP deletion: characterisation Bethan: social cognition, prematurity Alexandra Sin ad: gesture, language, SES, prematurity Lorna: stress, attention, prematurity getting closer to project completion
Would you be interested to see my CV? If so, click out and show it
Intersectionality in Universities Like any high-pressure environment, marginalized and disadvantaged groups are squeezed out of academia We have problems with Gender pay gap and gender balance in top roles Additional BME pay gap Exclusion / hidden status of LGBTQ+ groups, especially in STEM
The UCU strike as an example 15% gender pay gap Casualisation of the work force 20% drop in salaries in real terms comparison with other industries Average working week >> 35 hours Pensions: increasing contributions 40k, decreasing payout 200k
What does all this mean for autism research? discussion
Lessons for Informed Consumers Research is heavily constrained By time By funding By expertise By barriers Research is slow, and often behind the curve Research is good at making generalized statements, not specific recommendations
Take-home messages Hold the supervisor accountable, not the student Look at the last as well as the first author (in medical research) We look powerful, but we feel vulnerable Not everything we do is a real choice
1.2 Learning Objective To gain a general understanding of the quantitative and qualitative research paradigms, how/why they are chosen, and the realities of conducting research. Panel discussion, with script by Jackie
1.3 Learning Objective To have a general understanding of statistics and be able to interpret statistics in a research paper.
