cadth_2014_d6_tugwell_cadth_journals_conference_call_presentation_sofo

Results: Respondents

• n=49 (57% male)

• Age:

– 1 (2.0%) = 25-35yrs

– 17 (34.7%) = 36-45ys

– 15 (30.6%) = 46-55yrs

– 9 (18.4%) = 56-65 yrs

– 7 (14.3%) = 65+yrs

Results

0

2

4

6

8

10

12

14

16

18

25-35 36-45 46-55 56-65 65+

Age of participants

No. of respondents

Results: Respondents • n=49 (57% male)

• Age: – 1 (2.0%) = 25-35yrs

– 17 (34.7%) = 36-45ys

– 15 (30.6%) = 46-55yrs

– 9 (18.4%) = 56-65 yrs

– 7 (14.3%) = 65+yrs

• Stakeholder group

– 31 (63.2%) = Researchers

– 11 (22.4%) = Clinicians

– 5 (10.2%) = Patients

– 2 (4.1%) = Industry

0

10

20

30

40

50

60

70

Researcher Clinician Patient Industry

Stakeholder group

Participants

Results: Poisson distribution

0

2

4

6

8

10

12

14

16

18

1 2 3 4 5 6 7 8 9 10 11

No. of OMERACT attendances

No. of Participants

Results: Poisson distribution

0

5

10

15

20

25

30

35

40

45

50

1 2 3 4 5 6 7 8 9 10 11

% participants

% invited to participate

No. of OMERACT attendances

3 factor solution Eigenvalue:

Factor 1 = 16.0125; Factor 2 = 1.8990; Factor 3 = 1.763

Explained variance = 41%

(Factor 1 = 33%; Factor 2 = 4%; Factor 3 = 4%)

Correlations between factor scores:

1 2 3

1 100% 50% 47%

2 - 100% 43%

3 - - 100%

2 factor solution Eigenvalue:

Factor 1 = 16.0125; Factor 2 = 1.8990

Explained variance = 37%

(Factor 1 = 33%; Factor 2 = 4%)

Correlations between factor scores:

1 2

1 100% 61%

2 - 100%

Consensus statements: agree

The spirit of OMERACT is… Factor 1

Factor 2

Factor 3

S18: the research being driven by data/evidence 5 4 6

S20: the intimacy (small number of delegates) 2 2 4

S41: the emphasis on striving for global standardisation and validation of methods

6 6 6

S42: the lively methodological discussion 5 4 4



Factor 2

Factor 3




6 6 6


“The data will persevere, while opinions will change. Referral back to data drives forward the work (we all

have to produce our data) and prevents ‘eminence base medicine’ and an over-reliance on the opinion of senior

figures (usually old men) who pontificate” Male, Clinician, Factor 2



Factor 2

Factor 3




6 6 6


“Critical to develop real practical and reliable standards for obtaining measured evidence and the expression of such data…otherwise we are confronted with bias in an

area which cannot afford such for the community to progress”

Male, Researcher, Factor 2



Factor 2

Factor 3



6 6 6



“This is what makes the OMERACT conference unique compared to other major international

meetings within rheumatology” Female, Researcher, Factor 3

Consensus statements: disagree


Factor 2

Factor 3

S15: the opportunity to convince my peers that my work is satisfactory

-3 -3 -4

S16: having to be thick-skinned -5 -4 -6

S17: the sleepless nights -6 -5 -4

S22: the chance to get international recognition for my work -3 -2 -3

S26: the opportunity to meet ‘famous’ researchers/rheumatologists

-4 -3 -5

S30: the organised chaos -2 -2 -3

S63: the freedom to be a ‘geek’ amongst others like myself -3 -4 -3

S64: just an elitist clique -4 -6 -6



Factor 2

Factor 3


-3 -3 -4





-4 -3 -5




“OMERACT is anything but a personal platform”

Male, Researcher, Factor 2



Factor 2

Factor 3


-3 -3 -4





-4 -3 -5




“I don’t have sleepless nights at OMERACT”

Male, Industry, Factor 1



Factor 2

Factor 3


-3 -3 -4





-4 -3 -5




“Not interested in status, but in knowledge”

Female, Researcher, Factor 3



Factor 2

Factor 3


-3 -3 -4





-4 -3 -5




“I am not a geek and OMERACT is about communication, sharing experiences and data and not

personal characteristics. It should be data-driven, not person driven”

Male, Patient, Factor 1



Factor 2

Factor 3


-3 -3 -4





-4 -3 -5




“It encourages a wide variety of perspectives and is inclusive – it

is not a closed group” Female, Researcher, Factor 2

Consensus statements: neutral


Factor 2

Factor 3

S1: the credible reputation of the conference -1 -1 0

S14: the opportunity to hear about progress in areas of work other than my own

-1 -1 0

S21: the chance to get the OMERACT seal of approval -1 -1 0

S25: senior and junior delegates working together 3 2 1

S32: having a fellows programme for novice researchers 1 0 0

S40: the involvement of a core committed group of people 2 1 1

S56: the intensity (sessions from morning until night) -1 -2 0

S59: all delegates attending all sessions even if they are about a disease outside of their speciality (e.g. RA patient attending a Gout session)

2 1 0

S62: the minutiae of the discussion and debate 0 -1 -1

Three-factor solution

Factor 1

Factor 2

Factor 3

0

0 3

1 13

17

13

2

To me, the spirit of OMERACT is…

“OMERACT is an important platform to present new data and

to discuss the consequences of these

data”

n = 17

12 male (71%)

Researchers: 12 Clinicians: 2 Industry: 2 Patients: 1

Factor A

“The unique nature of OMERACT is captured

by…its inclusive, collaborative nature”

n = 13

6 male (46%)


Factor B

“OMERACT stands for quality and rigorous methodology and it

allows discussion about methodology beyond the standard level of saying

you performed the study in a good way”

n = 13

6 male (46%)


Factor C

Factor A: Factor array scores: Agreement

Statement Score

S19: The opportunity for interactive discussion +6

S23: The focus on outcome measures +6

S9: The opportunity to deal with controversial issues +5

S51: The intellectual stimulation +4

S57: Being given large amounts of information to read pre-conference -1

S34: The Gladiatorial nature (‘newbies’ have to prove their robustness and worth) -2

Factor B score: -6 Factor C score: -5

Factor B score: -4 Factor C score: -5

Factor A: Agreement compared with other factors

-8

-6

-4

-2

0

2

4

6

8

Interactivediscussion

Outcomemeasures

ControversialIssues

IntellectualStimulation

Pre-conferencereading

Gladiatorial

Factor A

Factor B

Factor C

Outcome measures are a way to include the patients perspectives into research.

The basic assumption that should underpin our methodology is that

patients are the best source of information to identify questions of importance and how they should be

presented. This is also why some widely used measures are outdated and should

be replaced or validated through the perspective of the patients. PROMIS is a

start. Female, Researcher

Critical focus, not addressed elsewhere Male, Clinician

OMERACT should focus on this topic Male, Clinician

It is hard to find time to have smart individuals in the same room who

want to talk about clinical trials methodology

Female, Researcher

The focus on outcome measures

The intellectual stimulation

This is diverse intellectual discussion within individuals from a variety of

backgrounds, which is often productive

Male, Researcher

Factor A: Factor array scores: Disagreement

Statement Score

S47: The final night entertainment -6

S60: The chance to get away from everything else in my working life -6

S27: The feeling of loyalty -5

S52: The feeling that when consensus is achieved it feels hard won and deserved

-2

S28: The feeling of belonging -2

S54: The feeling of being part of something unique -1

S6: Patients being given the power to drive the research agenda 0

Factor B score: +3 Factor C score: +3

Factor B score: +3 Factor C score: +1

Factor A: Disagreement compared with other factors

-7

-6

-5

-4

-3

-2

-1

0

1

2

3

4

Factor A

Factor B

Factor C

I enjoy my working life at home, and am able to choose other ways of

getting away from home if I would prefer so. Thus OMERACT is not an

excuse, but a nice location that provides the opportunity of [sic] open

air scientific discussions is an asset Female, Researcher

Conferences and meetings are part of work

Female, Researcher

Why is OMERACT needed for this? Male, Industry

To me, this is not related at all. I am usually looking forward to going home

asap after such a long and tiring meeting with hours and hours of flying

back home. Female, Researcher

The chance to get away from everything else in your

working life

The final night entertainment

There is nothing special or omeracty [sic] about the final night

Male, Researcher

Factor B: Factor array scores: Agreement

Statement Score

S3: Everyone’s opinions being treated as equal, regardless of their status +6

S4: The focus on small group discussions rather than presentations +6

S2: The open and vociferous discussion +5

S5: Patients being invited to the conference +5

S53: The exchange of ideas to address shared goals and challenges in different disease areas

+5

S38: The equal voting process +4

S54: The feeling of being part of something unique +3

S11: That it is neutral ground for ideas to be discussed +2

S28: The feeling of belonging +2

S35: The transparency +2

S33: Having a ‘buddy’ system for new patient delegates 0

S27: The feeling of loyalty -1

Factor A score: -4 Factor C score: -4

Factor A score: -5 Factor C score: -3

-2

-1

0

1

2

3

4

5

6

7

Everyone'sopinion equal

Small groupdiscussions

Open &vociferousdiscussion

Patients beinginvited

Exchange ofideas for

shared goals

Equal votingprocess

Factor A

Factor B

Factor C

Factor B: Agreement compared with other factors

Only with all relevant stakeholders owning the challenge/problem will

durable progress me made. Male, Researcher

The unique nature of OMERACT is captured by the way it is organised and its

inclusive, collaborative nature, where patients, clinicians, methodologists and

researchers are all encouraged to be involved and listened to. It is not similar to

any other organisation I am aware of. Female, Researcher

In small groups communication and reaching consensus and how we get there is easier and more interesting and useful. Of course the big plenarys [sic] are also

nice, but less useful to learn, understand and decide.

Male, Clinician

The exchange of ideas to address shared goals and challenges

The focus on small group discussions rather than presentations

The feeling of being part of something unique

Factor B: Factor array scores: Disagreement

Statement Score

S34: The Gladiatorial nature (‘newbies’ have to prove their robustness and worth) -6

S46: The remote locations chosen for the conference venue -5

S60: The chance to get away from everything else in my working life -5

S61: Being among the first to know about decisions made -5

S45: The beautiful, exotic locations chosen for the conference venue -4


S7: Helping therapies get approved -3

S29: Getting work done to tight timescales -3

S31: The special interest groups -2

Factor B: Disagreement compared with other factors

-7

-6

-5

-4

-3

-2

-1

0

1

2

3

Gladiatorial Remotelocations

Getting awayfrom work

First to knowabout decisions

Exotic locations

Factor A

Factor B

Factor C

Everyone has a mind and perception – the filter and other methodologies are a construct to

capture intellectual perceptions and experience etc. for which we all have…and newbies should feel

confident to express their thoughts but are often too intimidated by the OMERACT method…this may have

to do with strong personalities maybe appearing not so welcoming

to hear others Female, Researcher

My focus at the meetings is completely internal. It’s nice, but of no significance to

have a nice view or pleasant weather. Male, Clinician

The focus is to develop outcomes not therapies (someone else should do

that work) Male, Clinician

Approval is not relevant for procedures and less so for devices that are just as

relevant as pharmaceuticals to patients and the methods apply to them as well

Male, Researcher

The Gladiatorial nature The beautiful, exotic locations chosen for the conference venue

& The remote locations chosen for the

conference venue (cut off from civilisation)

The conference location has nothing to do with the spirit of OMERACT

Female, Researcher

Helping therapies to get approved

Factor C: Factor array scores: Agreement

Statement Score

S23: The focus on outcome measures +6

S24: International collaboration +5

S39: The focus on striving for consensus +5

S49: That it focuses and drives the research process made in between meetings +5

S13: The involvement of a wide variety of stakeholders +4

S37: The voting process being at the conference itself (enabling decisions to be made there and then)

+4

S50: Reinforcing the rules for adequate clinical trials +3

S54: The feeling of being part of something unique +3

S46: The remote locations chosen for the conference venue (cut off from civilisation)

+2

S8: It’s innovative nature +2

Factor A score: -4 Factor B score: -5

Factor C: Agreement compared with other factors

0

1

2

3

4

5

6

7

Outcomemeasures

Internationalcollaboration

Striving forconsensus

Drives researchprogress inbetweenmeetings

Voting processbeing at theconference

Factor A

Factor B

Factor C

The remote location means that once delegates are there, they are committed to contributing to

everything, and are not off out sightseeing. Having our own areas for dining mean that we continue debates over meals. All being in the

same location (rather than a range of conference hotels spread across a city) lengthens the day at both ends, and also allows for further socialising,

which further bonds the group. Female, Researcher.

Ensuring the data is there, that everyone understands it, discussions about strengths

and weaknesses, voting, back for the next meeting with

more data. Female, Clinician

I like the voting sessions, it really makes you think

about an issue Female, Researcher

The remote locations chosen for the conference venue

The focus on striving for consensus

The involvement of a wide variety of stakeholders

Not being a rheumatologist, I learned a great deal and was very much encouraged to contribute and explain my own discipline and its value to rheumatology. This brought me

into many of the other good relationships I have made at the meetings as well as the great ideas for running meetings. Without the broad mindedness and thoughtfulness of the

group none of that would have happened. Male, Researcher

Factor C: Factor array scores: Disagreement

Statement Score

S44: Having less visible egos than at other conferences -6


S34: The Gladiatorial nature (‘newbies’ have to prove their robustness and worth)

-5

S58: The quality of the moderators in the breakout sessions -4

S12: The commitment to theoretical underpinnings -3

S5: Patients being invited to the conference -1

Factor A score: -2 Factor B score: -6

Factor A score: +3 Factor B score: +5

Factor C: Disagreement compared with other factors

-8

-6

-4

-2

0

2

4

6

Less visible egos thanother conferences

Gladiatorial Quality of moderators Patients being invitedto conference

Factor A

Factor B

Factor C

This is unnecessary ego-tripping and can be very destructive, We were all

newbies once. Female, Researcher

The environment of OMERACT is mostly very friendly. Attending the meeting for the first time can feel

chaotic, but is not at all intimidating. Female, Researcher

The Gladiatorial nature

Being given large amounts of information to read pre-conference

No time to read, too much work to prepare

Female, Researcher

Explaining the 3 factors

• Factor A: Data-driven (The Head?) – Value data and intellectual debate – Work focussed – definitely not there to socialise

• Factor B: Community-driven (The Heart?) – Value equality, inclusiveness, communication – View OMERACT as a community they are part of, but the

location is not important for this

• Factor C: Process-driven (The Hands?) – Value the process of OMERACT such as the focus on outcome

measures and consensus, the voting and the design of having a remote conference location

– Less concerned about people and individual contributions and more about the bigger picture of how OMERACT ‘works’

cadth_2014_d6_tugwell_cadth_journals_conference_call_presentation_sofo

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