Empowering Chronic Kidney Disease Patients: A Personalized Electronic Health Record System for Enhanced Care and Management

Fatemeh Salehi, Mohammad Reza Mazaheri Habibi, Roxana Sharifian, Farhad Kazemzadeh, Masood Setoodefar



Introduction: Electronic health records are critical for diagnosis and treatment, but their development can be challenging and time-consuming process. Personal health records provide a practical and accessible solution by empowering patients to take an active role in their care. This study presents a personalized electronic health record system for chronic kidney disease patients, highlighting its potential benefits on patient care.

Material and Methods: In 2021, a practical study was conducted to develop and evaluate a personal health records software specifically for patients with chronic kidney disease. The analysis phase involved a literature review and validation process to review the dataset and key software functions. The study primarily focuses on the implementation process and exploratory usability evaluation results of the software. The development and evaluation process involved a health information management specialist and a medical informatics expert, and the software was evaluated by health information technology students using the Nielsen usability evaluation checklist.

Results: In the evaluation of the produced software, 12 issues were identified, of which three were related to the principle of user freedom and mastery over the system, three were related to the principle of consistency and standards, one was related to the principle of aiding users in diagnosis, and five were related to error prevention.

Conclusion: This study emphasizes the importance of compliance with clinical standards and user experience in developing successful personal health record software. Previous failures in similar systems have been attributed to non-compliance and unmet user expectations. The study aims to identify obstacles and improve the personal health records production process.


Personal Health Record; Usability; User Interface; User Experience; Heuristic Evaluation;


Roehrs A, da Costa CA, da Rosa Righi R, de Oliveira KSF. Personal health records: A systematic literature review. J Med Internet Res. 2017; 19(1): e13. PMID: 28062391 DOI: 10.2196/jmir.5876

Cramm JM, Nieboer AP. Is “disease management” the answer to our problems? No! Population health management and (disease) prevention require “management of overall well-being”. BMC Health Serv Res. 2016; 16(1): 500. PMID: 27655044 DOI: 10.1186/s12913-016-1765-z

Kuipers SJ, Cramm JM, Nieboer AP. The importance of patient-centered care and co-creation of care for satisfaction with care and physical and social well-being of patients with multi-morbidity in the primary care setting. BMC Health Serv Res. 2019; 19(1): 13. PMID: 30621688 DOI: 10.1186/s12913-018-3818-y

Abd-Alrazaq A, Bewick BM, Farragher T, Gardner P. Factors affecting patients’ use of electronic personal health records in England: Cross-sectional study. J Med Internet Res. 2019; 21(7): e12373. PMID: 31368442 DOI: 10.2196/12373

Baird A, North F, Raghu T. Personal health records (PHR) and the future of the physician-patient relationship. iConference. ACM; 2011.

Coorevits P, Sundgren M, Klein GO, Bahr A, Claerhout B, Daniel C, et al. Electronic health records: New opportunities for clinical research. J Intern Med. 2013; 274(6): 547-60. PMID: 23952476 DOI: 10.1111/joim.12119

Häyrinen K, Saranto K, Nykänen P. Definition, structure, content, use and impacts of electronic health records: A review of the research literature. Int J Med Inform. 2008; 77(5): 291-304. PMID: 17951106 DOI: 10.1016/j.ijmedinf.2007.09.001

Symons JD, Ashrafian H, Dunscombe R, Darzi A. From EHR to PHR: let’s get the record straight. BMJ Open. 2019; 9(9): e029582. PMID: 31537566 DOI: 10.1136/bmjopen-2019-029582

Heart T, Ben-Assuli O, Shabtai I. A review of PHR, EMR and EHR integration: A more personalized healthcare and public health policy. Health Policy and Technology. 2017; 6(1): 20-5.

Fylan F, Caveney L, Cartwright A, Fylan B. Making it work for me: Beliefs about making a personal health record relevant and useable. BMC Health Serv Res. 2018; 18(1): 445. PMID: 29898730 DOI: 10.1186/s12913-018-3254-z

Forchuk C, Reiss JP, O’Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: A qualitative analysis of an electronic personal health record. BMC Psychiatry. 2015; 15: 250. PMID: 26467210 DOI: 10.1186/s12888-015-0614-7

Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: A scoping review. J Am Med Inform Assoc. 2011; 18(4): 515-22. PMID: 21672914 DOI: 10.1136/amiajnl-2011-000105

Spil T, Klein R. Personal health records success: Why Google health failed and what does that mean for Microsoft health vault? International Conference on System Sciences. IEEE; 2014.

Wells S, Rozenblum R, Park A, Dunn M, Bates DW. Organizational strategies for promoting patient and provider uptake of personal health records. J Am Med Inform Assoc. 2015; 22(1): 213-22. PMID: 25326601 DOI: 10.1136/amiajnl-2014-003055

Davis FD. Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Quarterly. 1989; 13(3): 319-40.

Kim J, Jung H, Bates DW. History and Trends of "Personal Health Record" research in PubMed. Healthc Inform Res. 2011; 17(1): 3-17. PMID: 21818452 DOI: 10.4258/hir.2011.17.1.3

Sunyaev A. Evaluation of Microsoft health vault and Google health personal health records. Health and Technology. 2013; 3(1): 3-10.

Slesnick N, Pienkos S, Sun S, Doss-McQuitty S, Schiller B. The chronic disease self-management program: A pilot study in patients undergoing hemodialysis. Nephrol News Issues. 2015; 29(4): 22-3. PMID: 26263750

Li H, Jiang Y-f, Lin C-C. Factors associated with self-management by people undergoing hemodialysis: A descriptive study. Int J Nurs Stud. 2014; 51(2): 208-16. PMID: 23768411 DOI: 10.1016/j.ijnurstu.2013.05.012

Lin MY, Liu MF, Hsu LF, Tsai P-S. Effects of self-management on chronic kidney disease: A meta-analysis. Int J Nurs Stud. 2017; 74: 128-37. PMID: 28689160 DOI: 10.1016/j.ijnurstu.2017.06.008

Carlisle B, Kimmelman J, Ramsay T, MacKinnon N. Unsuccessful trial accrual and human subjects protections: An empirical analysis of recently closed trials. Clin Trials. 2015; 12(1): 77-83. PMID: 25475878 DOI: 10.1177/1740774514558307

Salehi F, Bastani P, Ahmadian L, Samadi K, Yazdani A, Sharifian R. Prerequisites of personal health record for chronic kidney disease: A scoping review and evaluation of the content validity. Stud Health Technol Inform. 2021; 285: 179-84. PMID: 34734871 DOI: 10.3233/SHTI210594

Fuji KT, Galt KA, Serocca AB. Personal health record use by patients as perceived by ambulatory care physicians in Nebraska and South Dakota: A cross-sectional study. Perspect Health Inf Manag. 2008; 5: 15. PMID: 18927602

Edwards ST, Dorr DA, Landon BE. Can personalized care planning improve primary care? JAMA. 2017; 318(1): 25-6. PMID: 28594991 DOI: 10.1001/jama.2017.6953

Agarwal R, Kochhar TA. A review of PHR, EMR and EHR integration: Personalized healthcare and public health. International Journal of Information Communication and Computing Technology. 2017; 5(2): 310-7.

Nazi KM. The personal health record paradox: health care professionals’ perspectives and the information ecology of personal health record systems in organizational and clinical settings. J Med Internet Res. 2013; 15(4): e70. PMID: 23557596 DOI: 10.2196/jmir.2443

Nabovati E, Vakili Arki H, Eslami S, Khajouei R. Usability evaluation of laboratory and radiology information systems integrated into a hospital information system. J Med Syst. 2014; 38(4): 35. PMID: 24682671 DOI: 10.1007/s10916-014-0035-z

Khajouei R. Evaluating the users' interaction problems with physiotherapy information system. Journal of Hospital. 2015; 14(3): 83-92.

Karampela M, Ouhbi S, Isomursu M. Personal health data: A systematic mapping study. Int J Med Inform. 2018; 118: 86-98. PMID: 30153927 DOI: 10.1016/j.ijmedinf.2018.08.006

DOI: https://doi.org/10.30699/fhi.v13i0.523


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