Data collection Methods_Jan20_2024 (1).pptx

Chronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's defined as kidney damage or a reduced glomerular filtration rate (GFR) that lasts for at least three months, regardless of the cause. CKD is usually asymptomatic in the early stages, and people may not realize they have it until the condition is more advancedChronic kidney disease (CKD) is a condition that occurs when the kidneys are damaged over time and have difficulty performing their functions. It's de

1. Presented by: Sahar Soomro EPIDEMIOLOGICAL DATA COLLECTION METHODS

2. Strictly speaking, data is the plural of datum , a single piece of information. Data are distinct pieces of information, usually formatted in a special way. In database management systems, data files are the files that store the database information. Research data is data in any format or medium that is collected, observed, or created, for purposes of analysis to produce original research results. Data vs. information o Data are plain facts. When data are processed, organized, structured or presented in a given context so as to make them useful, they are called information. DATA

3. The process of acquiring subjects and/or gathering information –so-called “research data” – needed f or a s t ud y . The process of gathering and measuring information on targeted variables in an established systematic fashion, which then enables one to answer relevant questions and evaluate outcomes. While methods vary by discipline and study design, the emphasis on ensuring accurate and hon es t c o ll e ct i on r ema i n s t he s a me . The goal for all data collection is to capture quality evidence that then translates to rich data analysis and allows the building of a convincing and credible answer to questions that have been posed. The ongoing systematic collection, analysis, and interpretation of health data necessary for designing, implementing, and evaluating public health prevention programs. (WHO) DATA COLLECTION - SELECT DEFINITIONS-

4. RESEARCH METHODOLOGY The methodology section is an outline of the broader strategy of your research approach Methodology does not equal methods 3 key components: selecting the overall research and analysis methods, selecting the appropriate data collection approach ( es ), designing the sampling strategy.

5. Positivism; reality can be measured and observed objectively Deductive appraoches Minimize confounding Large N  generalizability Dominant research paradigm in health research but difficult to grasp: Practices of actors Individual meaning Context of action New, unexplored or marginal social phenomena Interpretive framework, multiple realities shaped by personal viewpoints, contexts and meanings rich descriptions of views, beliefs and meanings and experiences Acknowledges the role of the researcher when shaping and producing data Inductive nature; hypotheses emerge from data; robust theory Interpretative and less standardized: small N Not representative (in a statistical sense) Difficult to test hypotheses RESEARCH METHODS Combines and integrates elements of both quantitative and qualitative approaches in one study (e.g., viewpoints, data collection methods, analysis and inference techniques) for the purpose of breadth and depth of understanding and corroboration Mixed methods Quantitative research Qualitative research

6. Experimental vs. observational designs Randomized-controlled trials (RCTs) Non-randomized analytical studies (case- control, cohort or cross- sectional studies) Descriptive studies Case study Ethnography Grounded theory Narrative approaches Phenomenology Qualitative description RESEARCH METHODS Many possible designs based on timing, weighting, and mixing of methods used o C on c u rr en t / p a r a llel ; sequential o Equal weight or QUANT- qual/ QUAL-quant o Merge, embed or connect Mixed methods Quantitative research Qualitative research

7. UMEÅ UNIVERSITY DEDUCTIVE VS. INDUCTIVE APPROACHES

8. Which factors to consider? Quality of data and its overall applicability to meet research objectives T ime , e . g . , p r o j e c t a nd timeline Resources available Material resources Financial resources Hu m a n r esou rc e s funding SELECTING RESEARCH AND DATA COLLECTION METHODS Quality Time Resources

9. UMEÅ UNIVERSITY The unit that will be used to record, measure and analyze the collected data The choice of unit will impact the time, resources needed to collect and analyse data Unit will define the depth of information and the scope of analysis Examples : Individual? Family? Household? Community? Village? Facilities? (schools, hospitals) National? Environment? UNIT OF ANALYSIS Ref: Ahrens, Handbook of Epidemiology (2007)

10. Depth of information Village level Family/ Household Level Individual Level Community, Group, Facility Level Time / Cost / Ac ce ss National level UNIT OF ANALYSIS Source: Impact.org

11. Primary data (“field research”) Tailored data collected by the user of that data. Original and raw. A d v a n t a g e s : t a r ge t ed ; pr e ci s e , current; known methodology; D i s a d v a n t a g e s : e x pen s ive a n d time consuming Secondary data (“desk research”) Data which has been collected for another purpose by someone other than the user. It plays an important role in the exploratory phase, helping to define key issues. Advantages : ease of access; cost and time-efficient; often longitudinal; variety of sources; often large N Disadvantages : specific to your purpose? Outdated? No control over data quality; biased towards data collectors? PRIMARY VS. SECONDARY DATA UMEÅ UNIVERSITY

12. HIERARCHY OF EVIDENCE

13. UMEÅ UNIVERSITY Quantitative Qualitative 1. Type of paradigm and analysis Confirmatory, deductive, objective, numeric-based Exploratory, inductive, subjective, narrative- based 2. Type of data collection Structured, close- ended data collection tools Semi-structured open- ended data collection tools 3. Type of sampling strategy Can use both probability or non- probability sampling  generalization to the wider population possible Non-probability sampling  generalization to the wider population not possible (in a statistical sense)

14. UMEÅ UNIVERSITY Quantitative Research Qualitative Research Using available information E.g., vital/civil/population statistics; medical records or patient/hospital registers; etc. E.g., text analysis from policy or program documentation Observations E.g., checklists, taking measurements or samples E.g., ethnographic observation methods Interviews E.g., structured interviews using questionnaires E.g., In-depth or key informant interviews; focus group discussions (FGDs) S e l f- a d m i n is te r e d questionnaires E.g., postal or electronic surveys (Open-ended questions)

15. Basic distinction: Collected through ‘ conversation ’ or observation primary vs. secondary data Probability or non-probability sampling techniques Structured closed-ended survey approaches Structured close-ended observational approaches QUANTITATIVE DATA COLLECTION

16. Collects quantifiable cross-sectional or longitudinal data through a ‘conversation’ Examples: Individual surveys Household surveys [Key informant interviews or group discussions (e.g. community or group level)] STRUCTURED SURVEY APPROACHES

17. Modes: PAPI : verbal interviews, face-to-face, using tr ad i t i ona l pape r an d pen c i l i n t e r v i e w CAP I : v e r ba l i n t e r v i e w s , f a c e - t o - f a c e u s i n g computer-assisted personal interviewing m e t h od s v i a pe r s ona l c o m pu t e r o r l a p t o p que s t i onna i r e p r og r a m s CATI : verbal interviews, by telephone, using pape r o r o r e l e c t r on i c c o m pu t e r a ss i s t ed questionnaires Remote data collection techniques Be a wa r e : Li t e r a c y i ndependent A ll o w s c l a r i f i c a t i o n o f que s t i on s H i ghe r r e s pon s e r a t e Mo re i n - dept h i nf o r mat i on o R e po r t i n g b i a s (“ s o c i a l desirability”) o I n t e r v i e w e r e f f e c t  i mpo r t an c e o f t r aining N o t goo d f o r s en s i t i v e que s t i on s T i me - c o n s u m i n g f i e l d w o r k INTERVIEWS

18. SELF-ADMINISTERED QUESTIONNAIRES Modes of administration: o PAPI : traditional paper and pencil self-administration “interview” methods by post, or handing paper questionnaires to people in person and asking them to complete them by hand and return them to the researcher CASI : computer-assisted (electronic) self-administration “interview” methods by automated electronic, including audio computer-assisted methods ACASI : self-administration via interactive voice response methods with automated computer-assisted telephone program. Advantages: Less expensive and quick Good for long questions No effect of the interviewer Can show pictures, maps, etc. Possibility for sensitive questions Disadvantages L i t e r a c y de p enden t Low response rate (follow ups) Misunderstanding of questions Less bias? Who answers?

19. Gathering data without a physical presence in data collection location and without direct, in- person contact with study population When is it useful? Disease outbreaks (e.g., Covid-19) Time and/or resource constraints Access constraints Security concerns Travel restrictions Lack of infrastructure Etc. REMOTE DATA COLLECTION

20. Data collected through observations using structured, close-ended checklists to collect quantifiable data E.g., specific object, behavior or event ‘medicine cabinets’; use of soap; attendance; equipment or facilities Provides detailed additional contextual information needed to frame for example an evaluation and helps making sense of data collected using other methods Be aware of: Co n f i den t i a li t y an d e t h i c a l i ss ue s ! Observer bias (unconscious assumptions or preconceptions harbored by the researcher) Hawthorne effect (observer effect) is a type of reactivity in which individuals modify or improve an aspect of their behavior in response to their awareness of being observed) Time consuming: Need for intensive staff training STRUCTURED OBSERVATIONS

21. ‘TOTAL SURVEY ERROR’ PERSPECTIVE Groves RM, Fowler FJ, Couper MP, Lepkowski JM, Singer E, Tourangeau R. (2009). Survey Methodology, Wiley

22. QUESTIONNAIRE DESIGN Main objectives in designing a questionnaire: To maximize the proportion of subjects answering our questionnaire—that is, the response rate . To obtain accurate relevant information for our survey. To maximize our response rate, we have to consider carefully how we administer the questionnaire, establish rapport , explain the purpose of the survey , and remind those who have not responded. In order to obtain accurate relevant information, we have to give some thought to what questions we ask, how we ask them, the order we ask them in, and the general layout of the questionnaire.  Questionnaire design and development must be supported by a logical, systematic, and structured approach!

23. Info r m a t i on w e a r e p r i m a r il y i n te r e s te d i n — th a t i s , d e p e nd e n t va r i a b l e s . Information which might explain the dependent variables—that is, i nd e p e nd e n t va r ia b le s . Other factors related to both dependent and independent factors which may distort the results and have to be adjusted for—that is, confounding variables . WHAT TO ASK?

24. Simple Yes/No question Running prompt questions Closed – one choice Closed – “mark all that applies” Multiple response – “mark all that applies” Filter questions (“If YES, continue with question XX) Open (-ended) questions (“Please tell us what you like best about…”) The questionnaire must meet the needs of… Researcher Respondent Interviewer Data entry staff (think about the coding of data beforehand!)  Importance of a priori study protocol and pilot testing QUESTIONS -TYPES AND RESPONSE OPTIONS-

25. A CATALOGUE OF BIASES IN QUESTIONNAIRES ( T AK E N F R O M CH O I , 2005 ) I N Q U ES T I O N D ES I G N Wording (ambiguity, complexity, double-barreled questions, uncommon words, vague words) Missing or inadequate data for intended purpose (belief vs. behavior, starting time, degraded data) Faulty scale (forced choice, missing or overlapping interval, scale format) Leading questions (framing, leading question, mind-set) Intrusiveness (reporting, sensitive questions) Inconsistencies (case definition, change of scale, change of wording, diagnostic vogue)

26. I N Q U ES T I O NNA I RE D ES I G N Poor formatting (horizontal format, juxtaposed scales, alignment) Too long (Nay/Yea saying, open questions, response fatigue, flawed s t r u c t u r e , ski pp i ng que s t i on s) A CATALOGUE OF BIASES IN QUESTIONNAIRES ( T AK E N F R O M CH O I , 2005 )

27. IN THE ADMINISTRATION OF THE QUESTIONNAIRE Interviewer is not objective (  inter-interviewer or intra-interviewer error; non-blinding) Respondent’s subconscious reaction (end aversion, positive satisfaction) Respondent’s conscious reaction (faking bad, faking good (= social desirability), unacceptable disease or exposure, unacceptability, underlying cause) Respondent’s learning (learning, hypothesis guessing) Respondent’s inaccurate recall (primacy vs recency, proxy respondent/surrogate data, re c al l , t el e scope) Cu l t u r a l d i ff e r e n ces ! A CATALOGUE OF BIASES IN QUESTIONNAIRES ( T AK E N F R O M CH O I , 2005 )

28. GOOD QU ES T I ON S ? H ow o ft en do y ou s m o k e? Regularly Occasionally Never Which age group do you belong to? U nde r 18 O v e r 18 O v e r 50 3) Being healthy and helping people is important in life. Yes No 4) H ow i s y our heal t h i n general? V e r y good Good Bad V e r y bad W hat i s y our i n c ome? Now we move on to question number 512 regarding the heal t h of y our gol d f i s h…

29. BASIC PSYCHOMETRICAL CONCEPTS ERROR Random measurement error (variability, “noise in t he sys t em ”) S ys t e m a t i c ( no n - random ) m ea s ure m ent error (=Bias) VALIDITY ‘mea s u r ing w ha t y ou t hin k y ou ’r e measuring’. C on t en t , c r i t e r i on and f a c t o r i a l v a li d i t y RELIABILITY t h e ab ili t y o f t h e que st i onna i r e to produc e t he s ame re s ul t s under t he s a me c o nd i t i on s t e s t - re t e s t reli abi li t y DISRCIMINATION people with identical numerical scores are identical in the construct being measured t h e d i f f e r en c e i n sc o r e i s p r opo r ti ona l t o t h e d i f f e r en c e be t w ee n peop l e

30. How can we do survey research if different respondents (perhaps from different cultures, countries, or ethnic groups) understand questions in completely different ways, or if investigators mean one thing and respondents think they mean something else? One way: Anchoring Vignettes “ Thick Description ” Anchoring vignettes are brief texts describing a hypothetical character who exemplifies a certain fixed level of the trait of interes t. The respondent is asked to rate the level of the trait for the vignette character as she/he would do for his/her own. The vignette ratings are used to identify the problem of reporting heterogeneity and then adjust the self-rating response by removing its systematic variation using either a parametric or non-parametric approach. Anchoring vignettes’ method has increasingly been used to improve interpersonal and cross- cultural comparability of survey questions in areas of political efficacy, work disability, job satisfaction, life satisfaction, health and health system responsiveness (Glob Health Action 2013, 6 : 21064) CROSS-CULTURAL ISSUES

31. VIGNETTE EXAMPLE FROM WHO-SAGE

32. Choice of data collection method influenced by many factors Questionnaire design – art or science? Essential epidemiological tool Questionnaire data are a prerequisite for drawing valid conclusions Design and usage to maximize validity and reliability and minimize error and bias Requires good knowledge of theory and language skills Consider where things can go wrong! Just the beginning of the journey… TAKE HOME MESSAGES

33. EXAMPLES OF AVAILABLE DATASETS Ca. 400 surveys in 90 countries www . d h sp r og r am. com Data collections https:// www.who.int/data/ collections S t a t is t i cs Sw e d en www.scb.se www . s h a r e- p r o j ect . o r g 29 European countries National Board of Health and Welfare www.socialstyrelsen.se www.indepth-network.org 50+ HDSS in 20 countries in Asia and Africa www.healthdata.org www.oecd.org www.pubmed.ncbi.nlm.nih.org