1. HIBBs is a program of the Global Health Informatics Partnership 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

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.

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.

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.

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.

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.

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

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.

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 16

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

18. Example Forms

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 24

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? 27

28. References Pirie, Phyllis L. Principles of Forms Design and Interviewing for Data Collection. SoCRA Source. February 2004, p.19-24.

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