Getting results for hematology patients through access to the electronic health record

David Wiljer, Sima Bogomilsky, Pamela Catton, Cindy Murray, Janice Stewart, Mark Minden

Abstract


Purpose: To conduct a needs assessment to identify patient and provider perceptions about providing patients with access to their electronic health record in order to develop an online system that is appropriate for all stakeholders. Methods: Malignant hematology patients were surveyed and health care providers were interviewed to identify issues and validate concerns reported in the literature. Based on the analysed data, a prototype will be designed to examine the feasibility and efficacy of providing patients with access to their electronic health record and tailored information. Results: 61% of patients reported using the internet to find health information; 89% were interested in accessing their electronic health record and 79% stated they would benefit from educational material along with the results. Staff members viewed patient online access to the record favourably, but expressed the importance of providing the necessary patient support and education. A Web-based prototype was developed for patients to review their registration data and blood results. Conclusions: Hematology oncology patients are more interested in using the internet to monitor their clinical information than to find health information. Using the constructed prototype, the feasibility of this project is currently being tested.


Full Text:

PDF

References


Abidi, S. S., Han, C. Y., & Abidi, S. R. (2001). Patient empowerment

via ‘pushed’ delivery of Personalised Healthcare educational content

over the internet. Medinfo, 10(Pt 2), 1425-1429.

CCS. (2003). Breaking Down the Barriers: study of cancer

patients and caregiver needs in Ontario. Canadian Cancer

Society.

Cimino, J. J., Li, J., Mendonca, E. A., Sengupta, S., Patel, V. L., &

Kushniruk, A. W. (2000). An evaluation of patient access to their

electronic medical records via the World Wide Web. Proc AMIA

Symp, 151-155.

Cimino, J. J., Patel, V. L., & Kushniruk, A. W. (2001). What do

patients do with access to their medical records? Medinfo, 10(Pt

, 1440-1444.

Cimino, J. J., Patel, V. L., & Kushniruk, A. W. (2002). The patient

clinical information system (PatCIS): technical solutions for and

experience with giving patients access to their electronic medical

records. Int J Med Inf, 68(1-3), 113-127.

Doupi, P., & van der Lei, J. (2002). Towards personalized internet

health information: the STEPPS architecture. Med Inform

Internet Med, 27(3), 139-151.

Eysenbach, G., & Jadad, A. R. (2001). Evidence-based patient choice

and consumer health informatics in the internet age. J Med

Internet Res, 3(2), E19.

Fowles, J. B., Kind, A. C., Craft, C., Kind, E. A., Mandel, J. L., &

Adlis, S. (2004). Patients’ interest in reading their medical record:

relation with clinical and sociodemographic characteristics and

patients’ approach to health care. Arch Intern Med, 164(7), 793-

Gerteis, M., Edgman-Levitan, S., Daley, J., & Delbanco, T. L. (1993).

Through the Patient’s Eyes: Understanding and Promoting

Patient-Centered Care. San Francisco: Jossey-Bass.

Hassol, A., Walker, J. M., Kidder, D., Rokita, K., Young, D., Pierdon,

S., et al. (2004). Patient experiences and attitudes about access to

a patient electronic health care record and linked web messaging.

J Am Med Inform Assoc, 11(6), 505-513.

Jadad, A. R., & Delamothe, T. (2004). What next for electronic communication

and health care? BMJ, 328(7449), 1143-1144.

Masys, D., Baker, D., Butros, A., & Cowles, K. E. (2002). Giving

patients access to their medical records via the internet: the PCASSO

experience. J Am Med Inform Assoc, 9(2), 181-191.

Pyper, C., Amery, J., Watson, M., & Crook, C. (2004). Patients’ experiences

when accessing their on-line electronic patient records in

primary care. Br J Gen Pract, 54(498), 38-43.

Ralston, J. D., Revere, D., Robins, L. S., & Goldberg, H. I. (2004).

Patients’ experience with a diabetes support programme based on

an interactive electronic medical record: qualitative study. BMJ,

(7449), 1159.

Ross, S. (2004). Providing a web-based online medical record with

electronic communication capabilities to patients with congestive

heart failure: Randomized trial. J Med Internet Res, 6(2), e12.

Ross, S., Todd, J., Moore, L. A., Beaty, B. L., Wittevrongel, L., & Lin,

C. T. (2005). Expectations of patients and physicians regarding

patient-accessible medical records. J Med Internet Res, 7(2), e13.

Ross, S. E., & Lin, C. T. (2003). The effects of promoting patient

access to medical records: a review. J Am Med Inform Assoc,

(2), 129-138.

Ueckert, F., Goerz, M., Ataian, M., Tessmann, S., & Prokosch, H. U.

(2003). Empowerment of patients and communication with health

care professionals through an electronic health record. Int J Med

Inf, 70(2-3), 99-108.

Winkelman, W. (2004). Reconciling the Patient’s Role in the

Improvement of Health Outcomes: Medical Informatics’ Newest

Frontier. Journal of Medical Internet Research, 6(2):e14.

Winkelman, W. J., & Leonard, K. J. (2004). Overcoming structural

constraints to patient utilization of electronic medical records: a

critical review and proposal for an evaluation framework. J Am

Med Inform Assoc, 11(2), 151-161.

Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S., &

Rozmovits, L. (2004). How the internet affects patients’ experience

of cancer: a qualitative study. BMJ, 328(7439), 564.


Refbacks

  • There are currently no refbacks.