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Patient entering their own data?

2»

Comments

  • maikekmaikek Posts: 22
    Oh,
    I was considering the same thing (about 400 patients answering max. 40 questions at two different times). Mostly because we have to be sure that only the right people are able to enter data - as far as giving them a different password each may provide some kind of security :-).
    Is training and supporting people the only reason not to use OpenClinica? We won't train or support anybody (and to be honest, I think nobody is as hard to train as physicians :-))
    Thanks Rick for recommending the survey tools, I'll have a look at those too.
    Maike
    Am 27.01.2011 17:22, schrieb [email protected]:
    >
    > We have some experience with Lime Survey and also Checkbox Survey Server. Lime Survey, being open source, gives you access to the source code. However I understand it’s data structures are not optimal. Checkbox is a sophisticated commercial product and has an API that includes web services. You may be able to use web services to move the survey data into OpenClinica (if that’s what you need).
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 27, 2011 8:33 AM
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > Yes we have considered a survey tools as well and will probably go for that solution.
    >
    >
    >
    > /Krister
    >
    >
    >
    >
    > Sent: den 26 januari 2011 18:02
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > I’m not sure I’d want to attempt this with OpenClinica. The idea of trying to train and support 200 patients and get their data in at the right times frightens me! Have you thought of collecting the data using electronic survey tools, which by design are more user friendly? Collecting the data that way you could either you could either import it into OpenClinica CRFs or merge it with the rest of the study data using a tool such as SAS prior to analysis.
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 26, 2011 3:40 AM
    > To: [email protected]; [email protected]
    > Subject: [Users] Patient entering their own data?
    >
    >
    >
    > We are facing a study where the patient are supposed to enter most of the data via the WEB themselves. How can we set up a role so a certain user only would see the data that he/she has entered and not any of the other patients data? We thought about making each patient a separate study site, but this is rather clumsy and takes a long time to set up. We are expecting several hundred patients!
    >
    >
    >
    > Anyone got an idea how to do this??
    >
    > Regards
    >
    >
    >
    > Krister
    >
    >
  • AishaAisha Posts: 65
    Hello all,
    we are facing the dame issue , and what we are thinking about is to let them answer the forms "hard copies" then using a software that called " FormIDEA" that covert the hard copies by scanning them first to excel sheets , but the main concern how we will import these excel sheets to OpenClinica ?
    Any suggetsion ?
    Thanks in Advance !
    On Thu, Jan 27, 2011 at 8:05 PM, Maike Kaluscha wrote:
    Oh,
    I was considering the same thing (about 400 patients answering max. 40 questions at two different times). Mostly because we have to be sure that only the right people are able to enter data - as far as giving them a different password each may provide some kind of security :-).
    Is training and supporting people the only reason not to use OpenClinica? We won't train or support anybody (and to be honest, I think nobody is as hard to train as physicians :-))
    Thanks Rick for recommending the survey tools, I'll have a look at those too.
    Maike
    Am 27.01.2011 17:22, schrieb [email protected]:
    >
    > We have some experience with Lime Survey and also Checkbox Survey Server. Lime Survey, being open source, gives you access to the source code. However I understand it’s data structures are not optimal. Checkbox is a sophisticated commercial product and has an API that includes web services. You may be able to use web services to move the survey data into OpenClinica (if that’s what you need).
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 27, 2011 8:33 AM
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > Yes we have considered a survey tools as well and will probably go for that solution.
    >
    >
    >
    > /Krister
    >
    >
    >
    >
    > Sent: den 26 januari 2011 18:02
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > I’m not sure I’d want to attempt this with OpenClinica. The idea of trying to train and support 200 patients and get their data in at the right times frightens me! Have you thought of collecting the data using electronic survey tools, which by design are more user friendly? Collecting the data that way you could either you could either import it into OpenClinica CRFs or merge it with the rest of the study data using a tool such as SAS prior to analysis.
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 26, 2011 3:40 AM
    > To: [email protected]; [email protected]
    > Subject: [Users] Patient entering their own data?
    >
    >
    >
    > We are facing a study where the patient are supposed to enter most of the data via the WEB themselves. How can we set up a role so a certain user only would see the data that he/she has entered and not any of the other patients data? We thought about making each patient a separate study site, but this is rather clumsy and takes a long time to set up. We are expecting several hundred patients!
    >
    >
    >
    > Anyone got an idea how to do this??
    >
    > Regards
    >
    >
    >
    > Krister
    >
    >
  • rwattsrwatts Posts: 102
    We’ve not actually worked on a study of this nature yet but had put together a proposal for a grant application. For me it’s mostly about how you manage the data collection process. Study coordinators and investigators typically understand the study and its timelines and are used to using relatively complex software. The patients not so much. If you have a study with 400 patients completing assessments (surveys) at intervals throughout the study you need to:

    1) Make it very easy for the patients or they just won’t do it reliably (just like doctors!)
    2) Send the patients reminders when their survey is due
    3) Make sure they complete the correct survey (assuming there are different questions at different time points)
    4) Have a policy for handling/querying missing or contradictory data (skip logic helps here and I personally would not normally query patient reported data after the event)
    5) Send out reminders or make telephone calls to patients who are late completing a survey
    6) Identify and manage patients who are having difficulty or not conforming

    Survey software such as Checkbox or Lime Survey can issue survey invitations by email and can automatically remind patients when their survey is due. But they can typically only do this one survey at a time and do not work well where a single patient needs to complete one or more surveys at multiple time points. You also need to be able to tie survey responses, which are usually identified with a token, to specific patients/subject ID.

    I would love to see a ‘survey’ module added to OpenClinica (for academic users REDCap has one). This could be based on event/CRF design, skip logic, etc. but would need a simplified data entry interface (only give the patient the option to complete the right forms at the right time) plus the reporting and management tools needed to manage the patient responses. (REDCap incidentally does not have this additional management capability, other than email invitations and reminders).

    Rick.
    Sent: January 27, 2011 10:06 AM
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    Oh,
    I was considering the same thing (about 400 patients answering max. 40 questions at two different times). Mostly because we have to be sure that only the right people are able to enter data - as far as giving them a different password each may provide some kind of security :-).
    Is training and supporting people the only reason not to use OpenClinica? We won't train or support anybody (and to be honest, I think nobody is as hard to train as physicians :-))
    Thanks Rick for recommending the survey tools, I'll have a look at those too.
    Maike
    Am 27.01.2011 17:22, schrieb [email protected]:
    We have some experience with Lime Survey and also Checkbox Survey Server. Lime Survey, being open source, gives you access to the source code. However I understand it’s data structures are not optimal. Checkbox is a sophisticated commercial product and has an API that includes web services. You may be able to use web services to move the survey data into OpenClinica (if that’s what you need).

    Rick.
    Sent: January 27, 2011 8:33 AM
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    Yes we have considered a survey tools as well and will probably go for that solution.

    /Krister
    Sent: den 26 januari 2011 18:02
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    I’m not sure I’d want to attempt this with OpenClinica. The idea of trying to train and support 200 patients and get their data in at the right times frightens me! Have you thought of collecting the data using electronic survey tools, which by design are more user friendly? Collecting the data that way you could either you could either import it into OpenClinica CRFs or merge it with the rest of the study data using a tool such as SAS prior to analysis.

    Rick.
    Sent: January 26, 2011 3:40 AM
    To: [email protected]; [email protected]
    Subject: [Users] Patient entering their own data?

    We are facing a study where the patient are supposed to enter most of the data via the WEB themselves. How can we set up a role so a certain user only would see the data that he/she has entered and not any of the other patients data? We thought about making each patient a separate study site, but this is rather clumsy and takes a long time to set up. We are expecting several hundred patients!

    Anyone got an idea how to do this??
    Regards

    Krister
  • maikekmaikek Posts: 22
    Hello Rick, thanks for answering.
    Our survey is not part of a study, it's a "study" itself. We only identify the participants by their randomized IDs because of data privacy, so we won't be able to remind them of anything even if we intended to do so. But it's a good suggestion, I'll check with the sponsor whether they might like to do this.
    We also never query patient questionnaires or diaries. And in this study the amount of "false" or missing responses is part of the criteria we analyse.
    I'd like to have a "patient module" in OC too, it would make followup procedures (e.g. Quality of Life questionnaires) much easier.
    I think that patients' Quality of Life assessment will become more and more important in clinical research.
    Maike
    Am 27.01.2011 18:55, schrieb [email protected]:
    >
    > We’ve not actually worked on a study of this nature yet but had put together a proposal for a grant application. For me it’s mostly about how you manage the data collection process. Study coordinators and investigators typically understand the study and its timelines and are used to using relatively complex software. The patients not so much. If you have a study with 400 patients completing assessments (surveys) at intervals throughout the study you need to:
    >
    >
    >
    > 1) Make it very easy for the patients or they just won’t do it reliably (just like doctors!)
    >
    > 2) Send the patients reminders when their survey is due
    >
    > 3) Make sure they complete the correct survey (assuming there are different questions at different time points)
    >
    > 4) Have a policy for handling/querying missing or contradictory data (skip logic helps here and I personally would not normally query patient reported data after the event)
    >
    > 5) Send out reminders or make telephone calls to patients who are late completing a survey
    >
    > 6) Identify and manage patients who are having difficulty or not conforming
    >
    >
    >
    > Survey software such as Checkbox or Lime Survey can issue survey invitations by email and can automatically remind patients when their survey is due. But they can typically only do this one survey at a time and do not work well where a single patient needs to complete one or more surveys at multiple time points. You also need to be able to tie survey responses, which are usually identified with a token, to specific patients/subject ID.
    >
    >
    >
    > I would love to see a ‘survey’ module added to OpenClinica (for academic users REDCap has one). This could be based on event/CRF design, skip logic, etc. but would need a simplified data entry interface (only give the patient the option to complete the right forms at the right time) plus the reporting and management tools needed to manage the patient responses. (REDCap incidentally does not have this additional management capability, other than email invitations and reminders).
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 27, 2011 10:06 AM
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > Oh,
    > I was considering the same thing (about 400 patients answering max. 40 questions at two different times). Mostly because we have to be sure that only the right people are able to enter data - as far as giving them a different password each may provide some kind of security :-).
    > Is training and supporting people the only reason not to use OpenClinica? We won't train or support anybody (and to be honest, I think nobody is as hard to train as physicians :-))
    > Thanks Rick for recommending the survey tools, I'll have a look at those too.
    > Maike
    >
    > Am 27.01.2011 17:22, schrieb [email protected]:
    >
    > We have some experience with Lime Survey and also Checkbox Survey Server. Lime Survey, being open source, gives you access to the source code. However I understand it’s data structures are not optimal. Checkbox is a sophisticated commercial product and has an API that includes web services. You may be able to use web services to move the survey data into OpenClinica (if that’s what you need).
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 27, 2011 8:33 AM
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > Yes we have considered a survey tools as well and will probably go for that solution.
    >
    >
    >
    > /Krister
    >
    >
    >
    >
    > Sent: den 26 januari 2011 18:02
    > To: [email protected]
    > Subject: Re: [Users] Patient entering their own data?
    >
    >
    >
    > I’m not sure I’d want to attempt this with OpenClinica. The idea of trying to train and support 200 patients and get their data in at the right times frightens me! Have you thought of collecting the data using electronic survey tools, which by design are more user friendly? Collecting the data that way you could either you could either import it into OpenClinica CRFs or merge it with the rest of the study data using a tool such as SAS prior to analysis.
    >
    >
    >
    > Rick.
    >
    >
    >
    >
    > Sent: January 26, 2011 3:40 AM
    > To: [email protected]; [email protected]
    > Subject: [Users] Patient entering their own data?
    >
    >
    >
    > We are facing a study where the patient are supposed to enter most of the data via the WEB themselves. How can we set up a role so a certain user only would see the data that he/she has entered and not any of the other patients data? We thought about making each patient a separate study site, but this is rather clumsy and takes a long time to set up. We are expecting several hundred patients!
    >
    >
    >
    > Anyone got an idea how to do this??
    >
    > Regards
    >
    >
    >
    > Krister
    >
    >
    >
  • rwattsrwatts Posts: 102
    That makes things a lot easier. One of the commercial or even Open Source survey tools should be adequate although will need careful management. Good luck.

    Rick.
    Sent: January 28, 2011 4:06 AM
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    Hello Rick, thanks for answering.
    Our survey is not part of a study, it's a "study" itself. We only identify the participants by their randomized IDs because of data privacy, so we won't be able to remind them of anything even if we intended to do so. But it's a good suggestion, I'll check with the sponsor whether they might like to do this.
    We also never query patient questionnaires or diaries. And in this study the amount of "false" or missing responses is part of the criteria we analyse.
    I'd like to have a "patient module" in OC too, it would make followup procedures (e.g. Quality of Life questionnaires) much easier.
    I think that patients' Quality of Life assessment will become more and more important in clinical research.
    Maike
    Am 27.01.2011 18:55, schrieb [email protected]:
    We’ve not actually worked on a study of this nature yet but had put together a proposal for a grant application. For me it’s mostly about how you manage the data collection process. Study coordinators and investigators typically understand the study and its timelines and are used to using relatively complex software. The patients not so much. If you have a study with 400 patients completing assessments (surveys) at intervals throughout the study you need to:

    Make it very easy for the patients or they just won’t do it reliably (just like doctors!)
    Send the patients reminders when their survey is due
    Make sure they complete the correct survey (assuming there are different questions at different time points)
    Have a policy for handling/querying missing or contradictory data (skip logic helps here and I personally would not normally query patient reported data after the event)
    Send out reminders or make telephone calls to patients who are late completing a survey
    Identify and manage patients who are having difficulty or not conforming

    Survey software such as Checkbox or Lime Survey can issue survey invitations by email and can automatically remind patients when their survey is due. But they can typically only do this one survey at a time and do not work well where a single patient needs to complete one or more surveys at multiple time points. You also need to be able to tie survey responses, which are usually identified with a token, to specific patients/subject ID.

    I would love to see a ‘survey’ module added to OpenClinica (for academic users REDCap has one). This could be based on event/CRF design, skip logic, etc. but would need a simplified data entry interface (only give the patient the option to complete the right forms at the right time) plus the reporting and management tools needed to manage the patient responses. (REDCap incidentally does not have this additional management capability, other than email invitations and reminders).

    Rick.
    Sent: January 27, 2011 10:06 AM
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    Oh,
    I was considering the same thing (about 400 patients answering max. 40 questions at two different times). Mostly because we have to be sure that only the right people are able to enter data - as far as giving them a different password each may provide some kind of security :-).
    Is training and supporting people the only reason not to use OpenClinica? We won't train or support anybody (and to be honest, I think nobody is as hard to train as physicians :-))
    Thanks Rick for recommending the survey tools, I'll have a look at those too.
    Maike
    Am 27.01.2011 17:22, schrieb [email protected]:
    We have some experience with Lime Survey and also Checkbox Survey Server. Lime Survey, being open source, gives you access to the source code. However I understand it’s data structures are not optimal. Checkbox is a sophisticated commercial product and has an API that includes web services. You may be able to use web services to move the survey data into OpenClinica (if that’s what you need).

    Rick.
    Sent: January 27, 2011 8:33 AM
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    Yes we have considered a survey tools as well and will probably go for that solution.

    /Krister
    Sent: den 26 januari 2011 18:02
    To: [email protected]
    Subject: Re: [Users] Patient entering their own data?

    I’m not sure I’d want to attempt this with OpenClinica. The idea of trying to train and support 200 patients and get their data in at the right times frightens me! Have you thought of collecting the data using electronic survey tools, which by design are more user friendly? Collecting the data that way you could either you could either import it into OpenClinica CRFs or merge it with the rest of the study data using a tool such as SAS prior to analysis.

    Rick.
    Sent: January 26, 2011 3:40 AM
    To: [email protected]; [email protected]
    Subject: [Users] Patient entering their own data?

    We are facing a study where the patient are supposed to enter most of the data via the WEB themselves. How can we set up a role so a certain user only would see the data that he/she has entered and not any of the other patients data? We thought about making each patient a separate study site, but this is rather clumsy and takes a long time to set up. We are expecting several hundred patients!

    Anyone got an idea how to do this??
    Regards

    Krister
This discussion has been closed.