cmwr

Web-based data collection and processing in international medical research: 

Web-based data collection and processing in international medical research Centre for International Health Friday 9th November 2001

EBM: 

EBM Arild Bjørndal Signe Flottorp Atle Klovning Medisinsk kunnskapshåndtering Flommen av ny medisinsk kunnskap er vanskelig å håndtere. Denne boka gjør oppgaven lettere, og oppøver evnen til å stille spørsmål som er relevante for klinisk og samfunnsmedisinsk praksis. Den viser hvordan man kan finne pålitelig kunnskap, og kritisk vurdere forskningsmetoder og -resultater. Forfatterne viser hvordan man kan implementere ny kunnskap i klinisk og samfunnsmedisinsk praksis. Målgrupper: Leger under spesialistutdanning, leger i praksis og medisinstudenter. ISBN: 82-417-1062-3

References and resources: 

References and resources This presentation WEB: www.medicalwebresearch.org/projectorg/cmwr.htm Download: www.medicalwebresearch.org/projectorg/cmwr.ppt The forms presented WEBSURVEY Sleep www.e-survey.dk/ndno/sleep_no/sleep_no.html WEBSURVEY Winter Depression www.e-survey.dk/ndno/SPAQ/spaq.html WEBEPI-UI www.e-survey.dk/ndno/ui/ui2.html Centre for Medical Web Research www.cmwr.org or www.medicalwebresearch.org Finding answers to questions in EBM www.uib.no/isf/people/atle/ebm.htm OECD CD-ROM of comparative health data

EBM: 

EBM Best evidence Clinical expertise Patient values

EBM: 1-2-3 overview: 

EBM: 1-2-3 overview 4-part question Patient, intervention, comparison, outcome 7-step search: typical mistake to start off in Medline (www.uib.no/isf/people/atle/ebm.htm) Cochrane Secondary publications www.ClinicalEvidence.org ________________________________ Medline Primary journals Guidelines Internet google, yahoo, E-post lists www.jiscmail.ac.uk 3-step critical appraisal: intern validity, result, extern validity

EBM: The 4-part question (PICO): 

EBM: The 4-part question (PICO)

Why Centre for Medical Web Research (www.CMWR.org)?: 

Why Centre for Medical Web Research (www.CMWR.org)? a need for an experimenting web site with no risk of jeopardising the UiB site, and having control over the technology an idea of a virtual, web-based collaboration of researchers protocols should be open for scrutiny development of a technology bit for data collection and handling, since most available software is inadequate applying Evidence Based Medicine Validation of methods RCT data collection an follow-up Surveys, epidemiological studies Diagnostic procedures in developing countries knowledge-sharing of web research experience

Methods: 

Methods PRO: To provide a web-based networking of researchers conducting Surveys RCT data collection Validation of diagnostic tests Model clinical decision-making PUBLIC: To validate direct-to-web-users research Effect of static pointer placing on various hosting web-sites Effect of dynamic banner distribution of forms (run-of-sites, banner networks)

Protocol phase: 

Protocol phase Setting up the protocol Formulating research questions Choosing design Blinding Concealment of allocation Triple blinding? Developing forms etc. Web-based sample size calculations Ethics and person data management

Conducting the study: 

Conducting the study Avoid bias in presenting the form Presenting the form Static on a hosting web site Dynamically by means of banners Input control and feedback Sequential analysis

Slide11: 

Build your form Deploy your form to an ftp-location, containing the cgi-script Download from ftp-site and clean up the HTML-code Upload again Distribute your form Collect responses (pump/autopump) Use the built-in analyser Quantitative: Univariate and bivariate data Qualitative: Text field analysis Export data to Excel, Word, HTML, SPSS for any further analyses

Build: 

Build

Defining structure: 

Defining structure

Deploy-collect responses-analyze: 

Deploy-collect responses-analyze

Deploy survey: 

Deploy survey

Distribute as e-mail form: 

Distribute as e-mail form

Distribute the link by e-mail: 

Distribute the link by e-mail

Place a survey banner on a hosting web site’s front page: 

Place a survey banner on a hosting web site’s front page

Collect responses: 

Collect responses

Collect responses: 

Collect responses

Analyze: 

Analyze Univariate Bivariate Text analysis One-click button to export to Excel Word HTML SPSS

Univariate analysis: 

Univariate analysis

2x2 table: 

2x2 table

Qualitative information: 

Qualitative information

Web epidemiology  WEBEPI-UI: 

Web epidemiology  WEBEPI-UI A study comparing data from classic epidemiological research is being prepared to validate web-based epidemiological research Survey questions related to urinary incontinence are being used, and made comparable with data collected in a large epidemiological study in Norway (HUNT) Bristol Urological Institute have deloped a similar form we are going to validate

WEBEPI-UI: 

WEBEPI-UI http://www.e-survey.dk/ndno/ui/ui2.html

Web RCT : 

Web RCT Randomised controlled trial of web-based vs. teacher guided EBM-course

Web security: 

Web security CIP: Cookie and IP-controlled medical web research Cookies have many functions, and this research project aims at looking at different ways of using cookies for research purposes Practical, ethical and technical aspects will be addressed

Web security: 

Web security STORED: Secure Transport Of REsearch Data One major concern has been secure transport of research data, and the assumption that any data stored online may be hacked or sabotaged. This project aims at developing a secure method of web-based handling of e-survey data. Emphasis is laid on web to e-mail, post-mail handling and storing offline. Security issues like log reporting, fault detection and hacker security will be addressed.

Web surveys: 

Web surveys Sleep This project aims at comparing self-reported sleep dysfunction with existing guideline criteria. This project has run, data have been collected, and are being analysed. (N=414 in 4 days) Winter Depression The Winter depression projects was one of our first e-survey projects, testing a rather complex web survey. Data have been collected and will be analysed and published. One of the research questions related to this study was too see how complex web surveys could be performed.

Sleep: 

Sleep http://www.e-survey.dk/ndno/sleep_no/sleep_no.html

Winter Depression: 

Winter Depression http://www.e-survey.dk/ndno/SPAQ/spaq.html

EBM : 

EBM Finding ansers to questions in evidence-based medicine http://www.medicalwebresearch.org/ebm/index.html

HONcode approval : 

HONcode approval

Ethics: 

Ethics

Ethical guidelines 1 : 

Ethical guidelines 1  Centre for Medical Web Research (CMWR) is founded on the vision of creating a virtual researcher community of highest quality. CMWR aims to improve public health through medical research and teaching using methods in accordance with evidence-based medicine. All web resources at CMWR are made available for the use of collaborators at all times. CMWR will ensure that collaborators also aim to exchange knowledge and co-operation across by means of this Web. CMWR is legally and morally committed by the medical oath not to pass on information that is entrusted by patients/site visitors. Information or data relating to individual patients and visitors of the CMWR Web site, including their identity, is respected by this site.

Ethical guidelines 2: 

Ethical guidelines 2 The independence and integrity of collaborating researchers is of vital importance to CMWR. Research at CMWR must fulfil the highest medical and ethical standards. Any project funders of CMWR will always be clearly identified, and commercial or non-commercial organizations that have contributed, will be acknowledged. Any competing interests will be declared.

Ethical guidelines 3: 

Ethical guidelines 3 CMWR wishes to continually improve its quality through means generated by MWR.COM projects, and to provide funding for MWR.ORG projects not fundable in other ways.

Ethical guidelines 4: 

Ethical guidelines 4 Any information given by CMWR is not meant to replace the relationship between a patient/site visitor and his/her existing physician.

Ethical guidelines 5: 

Ethical guidelines 5 CMWR will claim ownership of data and the right to publish no matter what results may show. 

Models: 

Models Virtual world-wide network of researchers Each researcher has access to the web-based form to enter data Direct-to-web-users Forms are placed in various media Banners are used to distribute the links to the forms

I: Virtual world-wide network of researchers: 

I: Virtual world-wide network of researchers

CMWR Sleep project: 

CMWR Sleep project e-survey to analyze sleep disorders among internet users II: Direct-to-web-users

Aims: 

Aims This project will: create a set-up for e-care (diagnosis and treatment) of patients with sleep disorders be a scientific research project, designed as a randomised controlled trial to validate this intervention There is great technology enthusiasm for web-based care, but lack of evidence of the efficacy/effectiveness of these web-based interventions according to a recent Cochrane overview of telemedicine Sleep disorders are very common, and often ill-diagnosed, and could easily be better diagnosed and treated

procedure: 

procedure questions based on SLK’s national therapy guideline

Survey banner on a hosting web front page: 

Survey banner on a hosting web front page

SOL published it on their front page: 

SOL published it on their front page

and on the top of SOL helse: 

and on the top of SOL helse

e-survey banner: 

e-survey banner

An example: 

An example Sleep disorders research

Sleep disorders medicine: 

Sleep disorders medicine Sleep disorders medicine is a clinical specialty which deals with the diagnosis and treatment of patients who complain about disturbed nocturnal sleep, excessive daytime sleepiness, or some other sleep-related problem

Sleep medicine: 

Sleep medicine Sleep medicine is currently in a state of transition. Growing field: sleep medicine has long relied upon the help and expertise of physicians who work in the field, but are not sleep specialists GPs: should be able to diagnose a majority of sleep disorders on their own and then only send the more difficult cases to a sleep specialist Realities: All people with sleep disorders should IDEALLY be diagnosed through a sleep clinic, staffed with sleep specialists and sleep technologists under their supervision, because the intricacies and subtleties of some sleep disorders can be completely missed without proper testing- the problem is capacity Ref.: http://www.lis.uiuc.edu/course/fall1999/lis433b/needs_assess_exem1.html

”My story”: 

”My story” http://www.sleepnet.com/insomnia/messages/856.html Posted by Sakina Gerhard on December 06, 1998 at 21:50:11: I wanted to update you folks about my situation. I had a Stanford appt Friday afternoon, and went with my boyfriend to Palo Alto. Got the tangible results back from my (11, not 14 day) wrist actigraph. Here's what it conclusively said (I got a big printout of the whole thing): I am sleeping. Only I am sleeping very lightly all the time. I am definately always only in stage one or two sleep. Never any deep sleep at all. Also, I have about 50 wake ups a night. To achieve stage one sleep takes me usually 45 minutes. Usually I sleep a few minutes at a time in stage one. My wake ups are normally one and a half minutes long

Actiwatch: 

Actiwatch

Actiwatch with reader: 

Actiwatch with reader

Testimonial: ”cutting edge”: 

Testimonial: ”cutting edge” Cambridge Neurotechnology are pleased to announce that they have been awarded the prestigious Millennium Products status for their Actiwatch range of monitors by the British Government. This is in recognition of the use of cutting edge technology and design concepts in the development and manufacture of Actiwatch monitors http://www.camntech.co.uk

Slide58: 

News Diseases Pollen Tests Technology example : Information ”everywhere” using WAP

Internet Disease Monitoring: 

Internet Disease Monitoring Asthma Pt. Peak Flow-meter WAP E-record GP Online access GP monitoring and giving feedback

Projects: 

Projects Actiwatch-based sleep disorder management sleep disorders PLMS Interactive sleep diary calculates sleep efficiency SPAQ Kappa agreement between self-reported winterdepression SPAQ HAD

Problems : 

Problems You need access to a computer and the Internet Internet security hazards Selection bias in direct-to-web-users studies Existing software not yet sufficient How could this be implemented in developing copuntries? ?

Advantages: 

Advantages Once the Internet access is in place, time is saved for many aspects of research Easy export of data to multiple platforms Easy to conduct multi-national studies ?

Finale: 

Finale We should not be techno-optimists All technology should validated Web-based research solves some problems, but creates others The web is only a medium- good research still needs a solid scientific basis based on properly formulated research questions