1. Regional East African Centre for Health Informatics
Introduction to Form Design
Regional East African Centre for Health Informatics
(REACH-INFORMATICS)
Wabuti Boniface
June 2011

2. Developing Paper Data Collection Forms

3. Learning objectives Tips for designing data collection forms
Importance of these tips
Encounter, Visit and Patient types
Determining what data needs to be collected
Examples
Questions ??????????

4. Tips in designing data collection forms
Clearly define the objectives/purposes/end products
Reporting
Research
Clinical care
Administrative
Consider how much information should be collected.
Work backwards using a reporting tool
Involve all players
Bullet 1 – Data is collected for many different reasons. The design of the form should reflect the reason why the data is being collected. For example, the data might be collected to help in answering research questions such as creating a list of children who have turned PCR positive this year and their progressive test results in all clinical care sites. Data collected for administrative purposes might be used to determine a faciliy’s catchment area and its population’s health priorities.
Bullet 2 - Collecting too much information can lead to forms that are longer than original study reports, thus time wasting. Collection of too little information, or omission of key data, can lead to the need to return to study reports later in the review process.
Bullet 3 – Knowing what you need to report, or what questions you are trying to answer, will help to better define the layout and content of the data collection form.
Bullet 4 – By including not only the end users of the data, but the collectors, and even the patients, in the design of the forms will ensure that the right data can be collected in a meaningful way.

5. Tips in designing data collection forms
Include the title of the review or a unique identifier.
Include a revision date, version number for the data collection form.
Provide space to record the name (or ID) of the person who is completing the form.
Leave space for notes near the beginning of the form.
Use of open format questions.
Bullet 1 - This will help identify the form consistently through multiple reviews
Bullet 2 - Forms occasionally have to be revised, and this reduces the chances of using an outdated form by mistake. It is also useful to know when what data was collected.
Bullet 3 – Should questions arise about the form it is useful to be able to discuss them with the person who fill it out.
Bullet 4 - This avoids placing notes, questions or reminders on the last page of the form where they are least likely to be noticed.
Bullet 5 – Open format questions are questions that ask for voluntary opinions. In other words, there are no predetermined set of responses, and the participant is free to answer however he chooses. Open format questions are good for soliciting subjective data or when the range of responses is not tightly defined. This would work well for mental health as an example especially where each patient presents with unique signs and symptoms. Analysis of this type of free-text data is, however, more difficult that analyzing structured data.

6. Tips in designing data collection forms
Closed format questions
Include assessment (or verification) of eligibility of the study near the beginning of the form.
Early sections of the form can be used for the process of assessing eligibility.
Record the source of each key piece of information collected, including where it was found in a report.
Bullet 1 – Closed format questions usually take the form of a multiple-choice question. They are easy for the respondent to answer. There is no clear consensus on the number of options that should be given in an closed format question. Obviously, there needs to be sufficient choices to fully cover the range of answers. Structured data from closed format questions can be easily aggregated and statistically analyzed, however it may not be as detailed as that data gathered from open format questions.
Bullet 2 – By including inclusion/exclusion focused questions at the beginning of the form, time and effort is saved as only relevant data will be collected.
Bullet 3 – It is important to keep a detailed description of how the form is to be used.; This description, or data dictionary, should describe the source for each data element on the form and how it will be used in producing final reports. While this can be done by highlighting the data in hard copy on the collection form, it is usually kept as a separate document, so as not to confuse the person filling out the collection form..

7. Tips in designing data collection forms
Code information in the same way regardless of source
Use tick boxes or coded responses to save time.
If there are many possible answers, use a pick list
Structure interview questions in a way that they call for confirmatory answers rather than open-ended patient response.
Bullet 1 – In order to aggregate data from many forms it must be coded consistently. For example, gender should be coded on one form as male/female and on another as M/F. Pick one coding standard and use it throughout the data collection.
Bullet 2 – The use of tick boxes is not only quicker but lessen the chance that the data entry will be misread.
Bullet 3 – Pick list help ensure consistent coding when multiple choices are available, but they do take up space on the form.
Bullet 4 – As discussed before, closed format questions produce more consistent data than open format questions, but they do limit the possible responses.

8. Tips in designing data collection forms
Have documented standard operating procedures that guide the use of the form, its development and review.
Plan to pilot the forms at different stages to get user feedback and before development of the database.
Have references like the concept (data) dictionary to define, create and store questions and their coded answers.

9. Tips in designing data collection forms
Include required (must fill) fields on your data collection form, for example: Unique ID, Name, Encounter Date, Provider, Encounter Location.
Have a clear purpose (and a clear answer) for every question.
Avoid asking for technical information that the participant is not likely to have.
Bullet 1 - This ensures that the data collected will be identified uniquely by specifying all the must fill fields. The required fields might be different for different data collection efforts.
Bullet 2 – Do not collect data that you do not need. Both the question, and if structured, the answer, should reflect the specific reason for collecting that data. For example, while the following questions are similar, they may produce two different answers: “Do you have any children?” and “Do you have any biological children?”
Bullet 3 – Know the level of detail that your participant is likely to know. This is the reason that it is useful to include a representative participant in your form design effort.

10. Tips in designing data collection forms
Avoid abbreviations and, if you must use them, then provide a glossary.
Provide a complete script for the interviewer that clearly differentiates instructions and questions.
Avoid inappropriate or repetitive questions and provide for avenues of explaining the need for sensitive information.
Bullet 1 – Remember, while some abbreviations might be familiar to you, don’t assume everyone knows what they mean. Either spell them out on the form, or provide a list that defines them.
Bullet 2 – This is particularly important if the form contains open format questions. The way that a question is asked can often have an influence on the answer. By having a complete script for the interviewers you will lessen the variability amongst them and help achieve better overall data quality. If instructions are included on the form itself, use capital letters, bold and italic fonts for them to make sure they stand out.
Bullet 3 - Respect the respondent’s and interviewers sensibilities (feelings) and time.

11. Tips in designing data collection forms
Use prepared introductory and transitional statements to make the questions flow smoothly.
Avoid questions that do not relate to the person.
In clinical trials, factor in collection of important information e.g., quality of life data, symptoms, side effects, and adverse events.
Have word questions identical for every respondent
Bullet 1 – As discussed before, a prepared script is helpful in ensuring a good interview. Give data collectors the words to use. For example, “These next few questions concern smoking habits.
Bullet 2 - Data collection is resource intensive, don’t collect data you don’t need.
Bullet 3 – Having a clear idea up front of what you are trying to achieve with the data collection effort will help to ensure that all of the relevant data is collected.
Bullet 4 - “Handle every unit being researched the same way”

12. Tips in designing data collection forms
Use language that everyone can understand
Time frames should be clearly specified.
Avoid questions that combine two questions, for example, “Are you able to do things like run and swim without difficulty?”
Include appropriate units
Give appropriate range values for the units
Use existing data collection tools when developing new ones.
Bullet 1 – Be aware of the likely level of education of your participants.
Bullet 2 – For example, if you are asking questions about the past, you need to specify “in the last week, in the last year, ever,” and so forth. Think about long and short time frames
Bullet 3 – There may be different responses to different parts of the question. For example, what about a person who swims well but cannot run? How would that be coded?
Bullet 4 – For example, mg, ml, kg, etc.
Bullet 5 – This helps ensure data quality. For example, a weight of kg would be possible, but one of 675 kg would not.
Bullet 6 - This will help provide directions to you or persons interested in developing data collection tools for the first time. ..

13. Grouping of questions
It is important to group related questions together because it determines:
How the variables will be defined and stored in the database
The flow of answering the questions, the order of questions and there answers
How the form will be programmed
How the data will be entered
How to identify missing data
How the data will be cleaned
How it will be extracted.

14. Encounter, Visit, and Patient types

15. Encounter
An encounter is a meeting with a health care provider, where the client receives any type of service.
There may be several types of encounters
Initial/first visits
Return/revisit/follow-up visits
Encounter types determine:
The frequency of care
The information to be captured and when to capture.
The type of care

16. Visit types
Encounters can be further coded by the patient appointment type
Scheduled
Unscheduled
Depending on the purpose of the data collection, encounter and visit types may be inter-changeable.

17. Patient types
Patients may also be classified by a variety of characteristics, for example:
Age
Pediatric
Adolescent
Adult
Treatment status
Inpatient
Outpatient

18. Example Forms

19. This form includes many of the design features that have been discussed. With a set of detailed instructions, it is likely to provide good quality data.
Can you identify the design features it uses?

20. While this form uses close format, structured data, it is rather poorly designed. In order to try and capture all the data on a single line, the form developer has made each data field very small. While this is ok for fields that contain only a single letter or number, others, such as the date fields, will be very hard to enter and read. This type of design is often seen in registries and log books. While it saves paper, it often leads to incomplete and poor quality data.

21. This is an example of a well laid out closed format question form
This is an example of a well laid out closed format question form. It might have been useful to make the first question a pick list instead of open format.

22. This is an example of a concept, or data, dictionary
This is an example of a concept, or data, dictionary. Note that each question is listed along with what type of format and whether the data is coded or not. For questions that use a pick list, all of the values on the list are noted. Tiis type of dictionary is very useful when analysis is being done on the data, particularly by people that were not directly involved with the data collection itself.

23. While both of these forms use closed format questions and coded tick boxes, the upper form is laid out in such a way that an automatic scanner can be used to enter the data into a computer without the need for a data entry clerk.

24. Challenges
Getting experts to help define concepts to be added in the dictionary
Different existing concept mappings
Getting approvals for designed or reviewed forms
Scheduling urgent changes
Drug concepts dynamics

25. Questions????????

26. Group Exercise
You are asked to come up with a primary care encounter form. They plan to fill out the paper form which later will be entered into electronic form.
Come up with a very short reporting tool/template with 5 indicators
List out all of the possible questions and expected answers that will help provide data to fill out your reporting tool.
Now group the related questions together and start to layout how the form will look like on paper.

27. Did you?????? Include required fields? Number the questions?
Include the title of the form?
Add version number, revised date, and page number in the footer?
Save your form in a meaningful naming convention?
Make sure the flow of the questions make sense?

28. References
Pirie, Phyllis L. Principles of Forms Design and Interviewing for Data Collection. SoCRA Source. February 2004, p

29. Thank You!
HIBBs is a program of the Global Health Informatics Partnership
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