Overcoming structural constraints to patient utilization of electronic medical records: a critical review and proposal for an evaluation framework

Learning points from paper

• characteristics that affect the influence of medical record structure on patient utilization of PHR: environmental pressures, physician centeredness, collaborative organizational culture, and patient centeredness
• A PHR system promotes patient participation in care to a greater extent than paper records because of its capacity for interaction
• For patients, structured entry formats may limit usability. For example, it has been shown that closed-ended questions followed by free-text entry are a preferred method of information entry among patients. (See Porter SC, Kohane IS. Optimal data entry by patients: effects of interface structure and design. Medinfo. 2001;10(pt 1):141–5.)

Environmental pressures

• Orienting toward a Single, Lifelong Electronic Health Record: realization of the goal of patient-access is likely to be restricted by legal and public policy as well as data and security requirements, patient confidentiality concerns, and interorganizational incompatibilities. (See van der Haak M, Mludek V, Wolff AC, et al. Networking in shared care–first steps towards a shared electronic patient record for cancer patients. Methods Inf Med. 2002;41:419–25.) For example, a universal patient indicator, mandated in the United States through the Health Information Portability and Accountability Act (HIPAA) to be implemented by 1998, has failed to be realized as of 2003.
• The Need for a Standard, Universal Language.

Physician-centeredness

• The Record Is a Tool for Physicians: Physicians are considered the central stakeholders whose needs determine systems in health care.
• In some cases, the structure of EPR systems can shape the physician's cognitive behavior and work processes, such as structuring data entry requirements primarily according to system capacities and not according to clinical acumen, generating additional work for the physician separate from patient care. (See Berg M, Langenberg C, van der Berg I, Kwakkernaat J. Considerations for sociotechnical design: experiences with an electronic patient record in a clinical context. Int J Med Inf. 1998;52(1-3):243–51.) These, in turn, may compromise utility of the system even for physicians, corrupting the overall organization of information and knowledge in the record, reducing any potential efficiency gains, and even influencing communication with the patient. (Patel VL, Kushniruk AW, Yang S, Yale JF. Impact of a computer-based patient record system on data collection, knowledge organization, and reasoning. J Am Med Inform Assoc. 2000;7:569–85.)
• Power Differentials: Power differentials exist in medical culture. (See Manias E, Street A. Nurses and doctors communicating through medication order charts in critical care. Aust Crit Care. 2001;14(1):17–23.) The physician-patient relationship is affected by a power differential, although this may not always be unwanted by both parties. (See Deber RB. Physicians in health care management: 8. The patient-physician partnership: decision making, problem solving and the desire to participate. Can Med Assoc J. 1994;151:423–7; Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices. Br J Gen Pract. 2000;50:892–9.)

Collaborative Organizational Culture

• Valuing Collaboration in System Design: the organizational structure of the modern hospital has a territorial disconnect between the administrative and clinical functional divisions. Hospital administration is highly dependent on clinicians to collect the information on service delivery, budgetary priorities, and operations from which organizational decisions are based. Therefore, the cost–effectiveness of the system, a principal determinant of return on investment, is wholly dependent on feasibility for and acceptance by clinician–users.
• Furthermore, the internal landscape of health care organizations can be irreversibly transformed by the introduction of any new information system.
• There may be little incentive on the part of either clinicians or administration to give patients access to the system if little further benefit is believed possible.
• Valuing Collaboration in Documentation: each clinician often contributes data content of the medical record with their own particular voice. (See: Poirier S. Voice: structure, politics, and values in the medical narrative. HEC Forum. 1999;11(1):27–37.) That is, every individual clinician may interpret the patient's disease narrative and chart their impressions using a lexicon that may be unique to their own specialty.
• The record then becomes a multivoiced rather than a unified representation of the patient with a trail of perspective-driven reports and entries, each implicitly claiming to represent the truth but with little communication between one another. (See: Rooksby J, Kay S. Clinical narrative and clinical organisation: properties of radiology reports. Medinfo. 2001;10(pt 1):680–4; Tange HJ, Smeets RP. Information exchange between physicians and nurses. Comput Methods Programs Biomed. 1994;43(3-4):261–7.)
• A culture that encourages active collaboration between nurses, physicians, and other clinicians in the development process of the information system as well as joint collaboration on chart note writing can result in a unified note structure that would be easier for patients to read, understand, and ultimately use. (See: Van der Meijden MJ, Tange HJ, Boiten J, Troost J, Hasman A. An experimental electronic patient record for stroke patients. Part 2: system description. Int J Med Inf. 2000;58-59:127–40; Robins A, Gallagher A, Rossiter MA, Lloyd BW. Evaluation of joint medical and nursing notes with preprinted prompts. Qual Health Care. 1997;6(4):192–3; Safran C, Sands DZ, Rind DM. Online medical records: a decade of experience. Meth Inf Med. 1999;38(4-5):308–12.)

Patient-centeredness

• Valuing the Patient as a Creator and User of Knowledge: Patients want to have unmitigated access to, if not ownership of, their medical records. (See: Denton IC. Will patients use electronic personal health records? Responses from a real-life experience. J Healthc Inf Manage. 2001;15:251–9.)
• But patient's lack of objectivity may generate misunderstanding about the overall meaning of the content and results, and thus hinder effective learning from the data presented. (See: Lowes RL. Here come patients who've “studied” medicine online. Med Econ. 1997;74:175–84.)
• Methods to enhance active learning have to be incorporated in the record to ensure that patients are able to understand and appreciate the significance of both personal data and supportive information. (See: Thompson LW. Cognitive-behavioral therapy and treatment for late-life depression. J Clin Psychiatr. 1996;57(suppl 5):29–37.)
• For example, integrating means for physician–patient communication into the record structure, such as e-mail linking or online question-and-answer bulletin boards or discussion forums (See: Neinstein L. Utilization of electronic communication (E-mail) with patients at university and college health centers. J Adolesc Health. 2000;27(1):6–11.; Anonymous. Use the Internet to reach more patients with your demand management programs. Healthc Demand Dis Manage. 1997;3(5):75–7; de Clercq PA, Hasman A, Wolffenbuttel BH. Design of a consumer health record for supporting the patient-centered management of chronic diseases. Medinfo. 2001;10(pt 2):1445–9.) enhances not only the value of record access by immediately guiding patients to the appropriate use of information at the time of access but also by emphasizing the central important presence of the physician–patient relationship (See: Moyer CA, Stern DT, Dobias KS, Cox DT, Katz SJ. Bridging the electronic divide: patient and provider perspectives on e-mail communication in primary care. Am J Manag Care. 2002;8:427–33.) even in cyberspace.
• Appreciating the Benefits of Patient Access to Health Data:
  • Patient access to and use of personal data is a helpful adjunct to effective patient care,111 leading to greater patient empowerment,112 and contributing to overall improvement in health outcomes.113
    
  • Note reading by patients results in significantly improved physician–patient communication and less confusion about health problems.114
    
  • Patients themselves believe that compliance with treatment regimens may improve if they have the opportunity to read their own charts and have access to test results presented in a clear, graphic manner.115
    
  • Medical record sharing has also been found to influence patient adherence to health promotion recommendations,116 but this and other benefits may be somewhat limited by a person's age or medical history.117
  • Patient access to personal medical data may act as an adjunctive therapeutic intervention, enhancing comfort,118 increasing self-reported satisfaction,119 augmenting a sense of empowerment over disease and health,120 and significantly improving self-reported health status and self-assessed physical functioning in patients with chronic disease.121
  • Other randomized, controlled trials of patients receiving summaries or supplemental records, however, fail to show statistically significant differences over controls in hospital readmission rates, in lengths of sick leaves, in numbers of postdischarge emergency visits,122 or in patient satisfaction, global health status, and quality of life.123
• Customization: Not All Patients Are the Same
  • patients with acute and chronic problems have different sets of needs, and these may be reflected in the respective gains from electronic records.¹²⁴
    
  • Patients with intermittent acute medical problems may derive greater utility from a summary interface such as a smart card.¹²⁵
    
  • Chronic diseases tend to support long-term partnerships between physicians and patients¹²⁶ and may benefit from the integration of records access, portability, and personal input¹²⁷ as well as online tools for decision support and knowledge management¹²⁸ to measurably influence health outcomes over time.¹²⁹
  • Future studies of chronic patients may yield disease-specific EPR usage patterns. For example, diabetes home-based self-management programs, with daily self-testing, may derive greater benefit from having access to electronic records.¹³⁰
  • Valuing Patient Contributions to the Medical Record
• Valuing Patient Contributions to the Medical Record
• The integration of patient-generated narratives of disease experiences in the medical record improves the relevance of the record,¹³¹ which also serves to broaden the health care provider's understanding of the patient's illness and, thus, enhancing the quality of health care and improving the outcomes of clinical decision making.¹³² A patient diary format containing both structured questionnaires and free-text elements appears to be well accepted by patients in chronic disease situations and can provide a patient-focused way for health care organizations to longitudinally monitor health outcomes such as quality of life during treatment regimens.¹³³ Diaries incorporated in the record have also been found to be valid and reliable narratives of patient experiences with acute, episodic, and chronic physical and mental illnesses.^134,135,136 Well-structured and evaluated disease-focused questionnaires provide a supplemental validation of the content in patient narratives and may assist physicians in the objective measurement of trends in a chronic patient's self-assessment of his or her health status over time.¹³⁷

  Importing a dialogic capacity to the EPR also has the added advantage of operationalizing a second, virtual layer of social interaction between patients and physicians. This validation of the patient's contribution mediates improved physician–patient collaboration and communication.^138,139 The resultant partnership empowers patients to take greater ownership of the outcomes of their care, a phenomenon already discovered from studies on the effects of shared ownership of paper-based records.^140,141

  Conversely, lack of a partnership has been found to compromise effective communication and severely limits patient utilization of medical records. In one clinical trial, between 20% and 40% of cancer patients were unable to use their shared records in their clinical visits because they felt intimidated or their physicians were either disinterested or too busy.¹⁴²

• Accounting for Patient Social Networks
• Patients often partner with family members, nonmedical caregivers, and other organizations to manage their health care problems and address their health care needs. Use of information systems may be shared by patients or their caregivers with members of their social network to enhance understanding, find support, and alleviate fear.^143,144,145 Other patients accessing a computer system from home may learn to support each other for the enhancement of understanding and the fulfillment of information needs.^{146,147,148,149}

  Much health information, including that contained within the medical record is not well understood by many patients. Health information seekers consult health professionals and other members of their social network, including the Internet, when information is unclear or apparently incomplete.¹⁵⁰
  

Critique of paper

Instructions (to be deleted): Explain any problems with the paper's methods or findings

Other comments

Projects highlighted:

• Informatics for Diabetes Education and Telemedicine (IDEATel)
• Patient Clinical Information System (PatCIS)
• Patient-Centered Access to Secure Systems Project (PCASSO)
  
• System to Provide Patients Access to Records Online (SPPARO)

Citation and Abstract

Centre for Global eHealth Innovation, University Health Network, Department of Health Policy, Management and Evaluation, University of Toronto, Ontario, Canada M5G 2C4. wwinkelm@uhnres.utoronto.ca

There are constraints embedded in medical record structure that limit use by patients in self-directed disease management. Through systematic review of the literature from a critical perspective, four characteristics that either enhance or mitigate the influence of medical record structure on patient utilization of an electronic patient record (EPR) system have been identified: environmental pressures, physician centeredness, collaborative organizational culture, and patient centeredness. An evaluation framework is proposed for use when considering adaptation of existing EPR systems for online patient access. Exemplars of patient-accessible EPR systems from the literature are evaluated utilizing the framework. From this study, it appears that traditional information system research and development methods may not wholly capture many pertinent social issues that arise when expanding access of EPR systems to patients. Critically rooted methods such as action research can directly inform development strategies so that these systems may positively influence health outcomes.

PMID: 14633932 [PubMed - indexed for MEDLINE]

PMCID: PMC353022

Related Links

• Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. [J Am Med Inform Assoc. 2005]
• ReviewDefinition, structure, content, use and impacts of electronic health records: a review of the research literature. [Int J Med Inform. 2008]
• The electronic patient record: a strategic planning framework. [Medinfo. 1995]
• Research into EPRs: how midwives really feel. [RCM Midwives. 2004]
• ReviewA systematic review of computer-based patient record systems and quality of care: more randomized clinical trials or a broader approach? [Int J Qual Health Care. 2004]