Data Collection Methods for research or thesis

Different types of data collection methods are discussed

1. Data Collections Methods Data: plural form of “datum” means piece of information Primary data : include the data that are collected for the first time, and are original and fresh. Secondary data: have previously been collected by someone else and have already undergone the statistical process.

2. Data Collections Methods How to measure exposures, outcome variables and other variables through various data collection tools Use of validated and standardized tools and questionnaires required to maintain internal rigor, comparisons and pooling of data across studies.

3. Data collection process The process of gathering and measuring information on variables of interest, in an established systematic fashion that enables one to answer stated research questions, test hypotheses, and evaluate outcomes. - U.S. Department of Health & Human Services

4. Data Collection Observation Data obtained from biological specimen

5. Observation Participant contact not required Not scientific if uncontrolled, common in behavioral research This method is particularly suitable in studies that deal with subjects who aren’t capable of giving verbal reports of their feelings for any reason.

6. Questionnaires/Patient reported data Standardized structured instruments focus on closed ended questions. Best used when: – There is a large sample – You want fairly straightforward information – You want standardized data from identical questions – You are more interested in what occurs rather than why and how. May be self reported or interviewer based , by phone, or via mail or the internet Used for recording socio-demographic information, risk factors and patient centered e.g anxiety, depression

7. Proxy/ informant data Collection of information of the study subjects from proxy informants can be challenging. Died cases or controls in retrospective studies Informants may be informal caregivers, family members or other stakeholders Responses on quality of life and cognitive function of the study subjects from care givers.

8. Hospital Medical Records Readily available, demographic and clinical information, can be linked to follow up data A commonly used source of data for clinical research May be incomplete, inconsistent, missing data and not standardized It may be used as the sole source of information or may be considered to complement information obtained through other instruments.

9. Collection of biological materials and analysis Employed in clinical and translational research. Can be linked to medical history and clinical data Stages in HCC can be linked to serum Alpha feto protein levels.

10. Questionnaire Development Is a questionnaire appropriate? ‹ Identify the resources that are available. ‹ Decide what information you need ‹ Select items for inclusion . Design the individual question.

11. Developing your questions Search the literature – bibliographic databases ( eg : Medline;Google Scholar) – Citation searches of key articles ‹ Preliminary research – focus groups – key informants interview

12. Type of Information Knowledge - what people know ‹Opinions, attitudes, beliefs, values - what people think about an issue ‹ Behaviour - what people do ‹Attributes - what are people’s characteristics ‹ - based on self-report

13. Type of questions Open-ended questions : ‹ What? Why? How? ‹ No predetermined responses given ‹ Able to answer in own words ‹ Useful exploratory research and to generate ideas ‹ Flexible ‹ Requires skill in asking questions and interpreting results ‹ Answers can lack uniformity and be difficult to analyze

14. Open ended questions What do you think about the quality of discharge summaries from the ED at hospital X?

15. Close-ended questions: ‹ Designed to obtain predetermined responses (Yes/No; True/False; strongly agree-strongly disagree, etc..) ‹ Easy to count and analyze ‹ Easy to interpret ‹

16. Closed ended questions The discharge summaries from hospital X allow me to provide adequate care to my patients

17. Please rate the quality of the discharge summaries from hospital X: … Poor … Fair … Good

18. Filter questions: Useful to ensure respondents only answer relevant parts of questions Unfiltered: – If you use a medical software program, which one do you use? Filtered: – Do you use a medical software program? … Yes No No - jump to next question … Yes - which one?

19. Getting the questions right Question wording – Questions need to be clear, simple and precise – Poorly written questions lead to ambiguity and misunderstandings and can be wasteful Responses – open, closed, what type of response set will you use?

20. Common Problems with wording Leading Questions : Do you prefer being examined by a doctor of your own sex? Would you rather be examined by a: 1. Male doctor 2. Female doctor 3. Either/doesn’t matter

21. Vague questions: Taken altogether, how happy are you with your stay in hospital? Overall, how would you describe the care you received in hospital?

22. Have you seen a doctor during the past year? In the last 12 months, have you visited a general practitioner? How long has it been since you last visited a general practitioner? (within the last month, between 1 and 12 months ago, more than 12 months ago?

23. Biased or value-laden questions : Do you think evidence-based medicine is a waste of time? What do you think of evidence-based medicine?

24. Threatening questions: How often do you smack your child? How often do you use each of the following to discipline your child?

25. Threatening Question: Do you know enough about treating patients at risk of stroke? How would you rate your knowledge of X for treating patients at risk of stroke? (I know very little, I need to learn a little more, I need to learn a lot more etc..

26. Double- barrelled questions two concepts in one question Have you had a neck ache or a back ache since your last visit?

27. Double- barrelled questions Have you had a neck ache or a back ache since your last visit? Since your last visit, have you had any of the following symptoms (tick as many that apply): Neck ache … Back ache Headache …

28. Negative questions: – avoid using negative wording ‘not’, ‘rarely’, ‘never’, or words with negative prefixes ‘in-’, ‘ im -’, ‘un-’. Doctors should not be required to see patients outside surgery hours: agree / disagree Doctors should be required to see patients outside regular hours: Agree/Disagree

29. Responses Closed ended questions are usually followed by a set of responses ‹ Choose type of scale: Nominal Ordinal Continuous (summed items with ordinal response scale)

30. Responses

31. Attitudes and behaviors lie on a continuum To what extent do you experience difficulty when climbing stairs in your house? – None – A little – Quite a bit – A lot – I do not have stairs in my house

32. Ordinal Cancer stage: -Localized -Regional -Metastatic What is the highest level of education you have reached: Did not complete primary school Completed primary school Up to, but not including year 10 Completed year 10 or equivalent HSC

33. Problems with Responses Fatigue/boredom/disinterest – agree with everything – just say ‘don’t know’ – always choose first response – ‘randomly’ respond without considering the question ‹ Social desirability ‹ Aversion to extreme ends of the scale

34. Problems with Responses Minimizing fatigue/boredom ‹ – Keep task simple – Eg easier to recall more recent events ‹ Keep words short and easy to understand ‹ Maintain motivation of participants – ensure task is relevant ‹ Ask people to justify their responses

35. Minimizing social desirability – is difficult to overcome – instruct that it is ok not to know something

36. Ordering Questions Sequence should be logical to the respondents and flow smoothly from one question to the next .‹ Questions tend to flow from: – general to specific – impersonal to personal – Easy to difficult

37. Layout of the Questions Layout as important as wording – cover letter/introductory page giving study title, organisation , aims of the survey – enough space for open-ended questions – font large enough to read without strain – consistent and clear instructions – don’t split questions or answers across pages – enough white space

38. Pilot Testing A ‘small study to test research protocols, data collection tools, sample recruitment strategies, and other research techniques in preparation for a larger study. To test the feasibility of the study protocol and identify weaknesses To test whether the study instrument(s), is asking the intended questions , whether the format is comprehensible and whether the selected validated tool is appropriate for the target population. To test– the time taken to complete questionnaire , and the subjects’ willingness to participate in the study. To test data entry, coding of the items, and appropriateness of statistical tests.

39. References Mazhar , S. A., Anjum , R., Anwar, A. I., & Khan, A. A. (2021). Methods of data collection: A fundamental tool of research.  Journal of Integrated Community Health (ISSN 2319-9113) ,  10 (1), 6-10. Saczynski JS, McManus DD, Goldberg RJ. Commonly used data-collection approaches in clinical research. Am J Med. 2013 Nov;126(11):946-50. doi : 10.1016/j.amjmed.2013.04.016. Epub 2013 Sep 16. PMID: 24050485; PMCID: PMC3827694. Hassan ZA, Schattner P, Mazza D. Doing A Pilot Study: Why Is It Essential? Malays Fam Physician. 2006 Aug 31;1(2-3):70-3. PMID: 27570591; PMCID: PMC4453116.

40. Acknowledgement Most of the valuable content has been taken from the presentation “How to design a questionnaire / survey” by Sarah Dennis School of Public Health and Community Medicine , University of New South Wales, Australia.