Development And Content Validation Of The Information Assessment Method For Patients And Consumers

Background: Online consumer health information addresses health problems, self-care, disease prevention, and health care services and is intended for the general public. Using this information, people can improve their knowledge, participation in health decision-making, and health. However, there are no comprehensive instruments to evaluate the value of health information from a consumer perspective. Objective: We collaborated with information providers to develop and validate the Information Assessment Method for all (IAM4all) that can be used to collect feedback from information consumers (including patients), and to enable a two-way knowledge translation between information providers and consumers. Methods: Content validation steps were followed to develop the IAM4all questionnaire. The first version was based on a theoretical framework from information science, a critical literature review and prior work. Then, 16 laypersons were interviewed on their experience with online health information and specifically their impression of the IAM4all questionnaire. Based on the summaries and interpretations of interviews, questionnaire items were revised, added, and excluded, thus creating the second version of the questionnaire. Subsequently, a panel of 12 information specialists and 8 health researchers participated in an online survey to rate each questionnaire item for relevance, clarity, representativeness, and specificity. The result of this expert panel contributed to the third, current, version of the questionnaire. Results: The current version of the IAM4all questionnaire is structured by four levels of outcomes of information seeking/receiving: situational relevance, cognitive impact, information use, and health benefits. Following the interviews and the expert panel survey, 9 questionnaire items were confirmed as relevant, clear, representative, and specific. To improve readability and accessibility for users with a lower level of literacy, 19 items were reworded and all inconsistencies in using a passive or active voice have been solved. One item was removed due to redundancy. The current version of the IAM4all questionnaire contains 28 items. Conclusions: We developed and content validated the IAM4all in partnership with information providers, information specialists, researchers and representatives of information consumers. This questionnaire can be integrated within electronic knowledge resources to stimulate users' reflection (eg, their intention to use information). We claim that any organization (eg, publishers, community organizations, or patient associations), can evaluate and improve their online consumer health information from a consumers' perspective using this method.162Anderson, A.S., Klemm, P., The internet: Friend or foe when providing patient education? (2008) Clin J Oncol Nurs, 12 (1), pp. 55-63. , [doi:10.1188/08.CJON.55-63] [Medline: 18258575]Benigeri, M., Pluye, P., Shortcomings of health information on the Internet (2003) Health Promot Int, 18 (4), pp. 381-386. , [FREE Full text] [Medline: 14695369]Tu, H.T., Cohen, G.R., Striking jump in consumers seeking health care information (2008) Track Rep, 20, pp. 1-8. , [Medline: 18770913]Fox, S., Duggan, M., (2013) Health Online Source: Pew Internet, , http://pewinternet.org/~/media//Files/Reports/PIP_HealthOnline.pdf, [accessed 2013-08-23] [WebCite Cache ID 6J5saZrOG]Baker, D.W., Wolf, M.S., Feinglass, J., Thompson, J.A., Gazmararian, J.A., Huang, J., Health literacy and mortality among elderly persons (2007) Arch Intern Med, 167 (14), pp. 1503-1509. , [doi:10.1001/archinte.167.14.1503] [Medline: 17646604]Kickbusch, I.S., Health literacy: Addressing the health and education divide (2001) Health Promot Int, 16 (3), pp. 289-297. , [FREE Full text] [Medline: 11509466]Rootman, I., Gordon-El-Bihbety, D., (2008) A Vision for A Health Literate Canada: Report of the Expert Panel on Health Literacy, , http://www.cpha.ca/uploads/portals/h-l/report_e.pdf, Source: Canadian Public Health Association. [accessed 2013-08-23] [WebCite Cache ID 6J5t1Unvf]Santana, S., Lausen, B., Bujnowska-Fedak, M., Chronaki, C.E., Prokosch, H.U., Wynn, R., Informed citizen and empowered citizen in health: Results from an European survey (2011) BMC Fam Pract, 12, p. 20. , [FREE Full text] [doi:10.1186/1471-2296-12-20] [Medline: 21496309]Dwyer, D.S., Liu, H., The impact of consumer health information on the demand for health services (2013) Q Rev Econ Finance, 53 (1), pp. 1-11Frenk, J., Reinventing primary health care: The need for systems integration (2009) Lancet, 374 (9684), pp. 170-173. , [doi:10.1016/S0140-6736(09)60693-0] [Medline: 19439350]Zamaria, C., Fletcher, F., Canada online! the internet media and emerging technologies: Uses attitudes trends and international comparisons (2007) Source: Canadian Internet Project, , http://www.omdc.on.ca/Assets/Research/Research+Reports/ Canada+Online+2007/Canada+Online+2007+-+Final+-+Sept+22+08.pdf.pdf, [accessed 2013-08-23] [WebCite Cache ID 6J5tCbsEs](2000) Les Solutions Émergentes - Rapport et Recommandations (Rapport Clair), , http://publications.msss.gouv.qc.ca/acrobat/f/documentation/2000/00-109. pdf, Commission d'étude sur les services de santé et les services sociaux. Source: Ministère de la Santé et des Services sociaux Québec [accessed 2013-08-23] [WebCite Cache ID 6J5sw2S05]Smith, S., Duman, M., The state of consumer health information: An overview (2009) Health Info Libr J, 26 (4), pp. 260-278. , [doi:10.1111/j.1471-1842.2009.00870.x] [Medline: 19930474]Hanif, F., Read, J.C., Goodacre, J.A., Chaudhry, A., Gibbs, P., The role of quality tools in assessing reliability of the internet for health information (2009) Inform Health Soc Care, 34 (4), pp. 231-243. , [doi:10.3109/17538150903359030] [Medline: 19919300]McCray, A.T., Promoting health literacy (2005) J Am Med Inform Assoc, 12 (2), pp. 152-163. , [FREE Full text] [doi:10.1197/jamia.M1687] [Medline: 15561782]Saracevic, T., Kantor, P., Studying the value of library and information services. Part I. Establishing a theoretical framework (1997) J. Am. Soc. Inf. Sci, 48 (6), pp. 527-542. , Jun. [doi:10.1002/(SICI)1097-4571(199706)48: 6<527::AID-ASI6>3.0. CO;2-W]Pluye, P., Grad, R., Repchinsky, C., Jovaisas, B., Johnson-Lafleur, J., Carrier, M., Four levels of outcomes of information-seeking: A mixed methods study in primary health care (2012) J Am Soc Inf Sci Tec, 64 (1), pp. 108-125. , [doi:10.1002/asi.22793]Norman, C.D., Skinner, H.A., EHealth literacy: Essential skills for consumer health in a networked world (2006) J Med Internet Res, 8 (2), pp. e9. , [FREE Full text] [doi:10.2196/jmir.8.2.e9] [Medline: 16867972]Godin, G., Sheeran, P., Conner, M., Delage, G., Germain, M., Bélanger-Gravel, A., Which survey questions change behavior? Randomized controlled trial of mere measurement interventions (2010) Health Psychol, 29 (6), pp. 636-644. , [doi:10.1037/a0021131] [Medline: 20939639]Fishbein, M., Ajzen, I., (2010) Predicting and Changing Behavior: The Reasoned Action Approach, , New York NY: Psychology PressD'Alessandro, D.M., Kreiter, C.D., Kinzer, S.L., Peterson, M.W., A randomized controlled trial of an information prescription for pediatric patient education on the Internet (2004) Arch Pediatr Adolesc Med, 158 (9), pp. 857-862. , [doi:10.1001/archpedi.158.9.857] [Medline: 15351750]Green, M.J., Peterson, S.K., Baker, M.W., Harper, G.R., Friedman, L.C., Rubinstein, W.S., Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: A randomized controlled trial (2004) JAMA, 292 (4), pp. 442-452. , [FREE Full text] [doi:10.1001/jama.292.4.442] [Medline: 15280342]Heller, L., Parker, P.A., Youssef, A., Miller, M.J., Interactive digital education aid in breast reconstruction (2008) Plast Reconstr Surg, 122 (3), pp. 717-724. , [doi:10.1097/PRS.0b013e318180ed06] [Medline: 18766034]Scherrer-Bannerman, A., Fofonoff, D., Minshall, D., Downie, S., Brown, M., Leslie, F., Web-based education and support for patients on the cardiac surgery waiting list (2000) J Telemed Telecare, 6 (SUPPL. 2), pp. S72-S74. , [Medline: 10975110]Wagner, T.H., Hu, T.W., Hibbard, J.H., The demand for consumer health information (2001) J Health Econ, 20 (6), pp. 1059-1075. , [Medline: 11758048]Wise, M., Han, J.Y., Shaw, B., McTavish, F., Gustafson, D.H., Effects of using online narrative and didactic information on healthcare participation for breast cancer patients (2008) Patient Educ Couns, 70 (3), pp. 348-356. , [FREE Full text] [doi:10.1016/j.pec.2007.11.009] [Medline: 18201859]Abrahamson, J.A., Fisher, K.E., Turner, A.G., Durrance, J.C., Turner, T.C., Lay information mediary behavior uncovered: Exploring how nonprofessionals seek health information for themselves and others online (2008) J Med Libr Assoc, 96 (4), pp. 310-323. , [FREE Full text] [doi:10.3163/1536-5050.96.4.006] [Medline: 18974809]Anderson, J.G., Rainey, M.R., Eysenbach, G., The impact of CyberHealthcare on the physician-patient relationship (2003) J Med Syst, 27 (1), pp. 67-84. , [Medline: 12617199]Boot, C.R., Meijman, F.J., The public and the Internet: Multifaceted drives for seeking health information (2010) Health Informatics J, 16 (2), pp. 145-156. , [doi:10.1177/1460458210364786] [Medline: 20573646]Cline, R., Haynes, K.M., Consumer health information seeking on the Internet: The state of the art (2001) Health Educ Res, 16 (6), pp. 671-692. , [doi:10.1093/her/16.6.671]Keselman, A., Logan, R., Smith, C.A., Leroy, G., Zeng-Treitler, Q., Developing informatics tools and strategies for consumer-centered health communication (2008) J Am Med Inform Assoc, 15 (4), pp. 473-483. , [FREE Full text] [doi:10.1197/jamia.M2744] [Medline: 18436895]McMullan, M., Patients using the Internet to obtain health information: How this affects the patient-health professional relationship (2006) Patient Educ Couns, 63 (1-2), pp. 24-28. , [doi:10.1016/j.pec.2005.10.006] [Medline: 16406474]Pereira, J.L., Koski, S., Hanson, J., Bruera, E.D., Mackey, J.R., Internet usage among women with breast cancer: An exploratory study (2000) Clin Breast Cancer, 1 (2), pp. 148-153. , discussion 154 [doi:10.3816/CBC.2000.n.013] [Medline: 11899653]Rice, R.E., Influences, usage, and outcomes of Internet health information searching: Multivariate results from the Pew surveys (2006) Int J Med Inform, 75 (1), pp. 8-28. , [doi:10.1016/j.ijmedinf.2005.07.032] [Medline: 16125453]Wald, H.S., Dube, C.E., Anthony, D.C., Untangling the web - The impact of Internet use on health care and the physician-patient relationship (2007) Patient Educ Couns, 68 (3), pp. 218-224. , [doi:10.1016/j.pec.2007.05.016] [Medline: 17920226]Weaver, J.B., Mays, D., Weaver, S.S., Hopkins, G.L., Eroglu, D., Bernhardt, J.M., Health information-seeking behaviors, health indicators, and health risks (2010) Am J Public Health, 100 (8), pp. 1520-1525. , [doi:10.2105/AJPH.2009.180521] [Medline: 20558794]Klemm, P., Bunnell, D., Cullen, M., Soneji, R., Gibbons, P., Holecek, A., Online cancer support groups: A review of the research literature (2003) Comput Inform Nurs, 21 (3), pp. 136-142. , [Medline: 12792194]Owen, J.E., Klapow, J.C., Roth, D.L., Shuster, J.L., Bellis, J., Meredith, R., Randomized pilot of a self-guided internet coping group for women with early-stage breast cancer (2005) Ann Behav Med, 30 (1), pp. 54-64. , [doi:10.1207/s15324796abm3001-7] [Medline: 16097906]Ryhänen, A.M., Siekkinen, M., Rankinen, S., Korvenranta, H., Leino-Kilpi, H., The effects of Internet or interactive computer-based patient education in the field of breast cancer: A systematic literature review (2010) Patient Educ Couns, 79 (1), pp. 5-13. , [doi:10.1016/j.pec.2009.08.005] [Medline: 19744817]Mettler, M., Kemper, D.W., Information therapy: The strategic role of prescribed information in disease self-management (2006) Stud Health Technol Inform, 121, pp. 373-383. , [Medline: 17095835]Finfgeld, D.L., Therapeutic groups online: The good, the bad, and the unknown (2000) Issues Ment Health Nurs, 21 (3), pp. 241-255. , [Medline: 11075065]Bessell, T.L., McDonald, S., Silagy, C.A., Anderson, J.N., Hiller, J.E., Sansom, L.N., Do Internet interventions for consumers cause more harm than good? A systematic review (2002) Health Expect, 5 (1), pp. 28-37. , [Medline: 11906539]D'Souza, V., (2013) Information and Its Importance in Headneck Cancer Care, , http://www.researchgate.net/publication/ 258237129_INFORMATION_AND_ITS_IMPORTANCE_IN_HEAD_AND_NECK_CANCER_CARE, Montreal Canada: McGill University [accessed 2014-02-04] [WebCite Cache ID 6N8fBeHiA]Shahab, L., McEwen, A., Online support for smoking cessation: A systematic review of the literature (2009) Addiction, 104 (11), pp. 1792-1804. , [doi:10.1111/j.1360-0443.2009.02710.x] [Medline: 19832783]Walters, S.T., Wright, J.A., Shegog, R., A review of computer and Internet-based interventions for smoking behavior (2006) Addict Behav, 31 (2), pp. 264-277. , [doi:10.1016/j.addbeh.2005.05.002] [Medline: 15950392]Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., Stern, A., Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions (2004) BMJ, 328 (7449), p. 1166. , [FREE Full text] [doi:10.1136/bmj.328.7449.1166] [Medline: 15142921]Haynes, S.N., Richard, D., Kubany, E.S., Content validity in psychological assessment: A functional approach to concepts and methods (1995) Psychol Assess, 7 (3), pp. 238-247. , [doi:10.1037/1040-3590.7.3.238]Haynes, S.N., Lench, H.C., Incremental validity of new clinical assessment measures (2003) Psychol Assess, 15 (4), pp. 456-466. , [doi:10.1037/1040-3590.15.4.456] [Medline: 14692842]Argyris, C., Putnam, R., McLain Smith, D., (1985) Action Science, , San Francisco CA: Jossey-BassFoote Whyte, W., (1991) Participatory Action Research, , Newbury Park CA: Sage PublicationsNurss, J., Parker, R., Williams, M., Baker, D., (2001) Directions for Administration and Scoring and Technical Data, Short Test of Functional Health Literacy in Adults (S-TOFHLA-English & S-TOFHLA-Spanish), , Snow Camp, NC: Peppercorn Books & Press(2013), http://www.hc-sc.gc.ca/hl-vs/iyh-vsv/index-eng.php, Health Canada. Healthy Living - It's Your Health Source: Health Canada [accessed 2013-08-23] [WebCite Cache ID 6J5pmp7ry]Schmuckler, M.A., What is ecological validity? A dimensional analysis (2001) Infancy, 2 (4), pp. 419-436. , [doi:10.1207/s15327078in0204-02]Vogt, D.S., King, D.W., King, L.A., Focus groups in psychological assessment: Enhancing content validity by consulting members of the target population (2004) Psychol Assess, 16 (3), pp. 231-243. , [doi:10.1037/1040-3590.16.3.231] [Medline: 15456379