Patients' experience with a diabetes support programme based on an interactive electronic medical record: qualitative study
http://www.100md.com
《英国医生杂志》
1 Center for Health Studies, Group Health Cooperative, 1730 Minor Avenue, Suite 1600, Seattle, WA 98101-1448, USA, 2 University of Washington, School of Public Health and Community Medicine, Department of Health Services, Box 357660, Seattle, WA 98195-7660, 3 University of Washington, Department of Medical Education and Biomedical Informatics, Box 357240, Seattle, WA 98195-357240, 4 University of Washington, Department of Medicine, Box 359780, Seattle, WA 98195-359780
Correspondence to: J D Ralston ralston.j@ghc.org
Abstract
Objective To describe the experiences of patients with type 2 diabetes in a web based disease management programme based on an interactive electronic medical record.
Design Qualitative analysis of semistructured interviews with patients enrolled in a diabetes care module that included access to their electronic medical record, secure email, ability to upload blood glucose readings, an education site with endorsed content, and an interactive online diary for entering exercise, diet, and medication.
Setting Patients' homes in Washington state, United States.
Participants Nine participants aged 45-65 completed interviews before and after they used the programme.
Results Six themes emerged: feeling that non-acute concerns are uniquely valued; enhanced sense of security about health and health care; frustration with unmet expectations; feeling more able to manage; valuing feedback; and difficulty fitting the programme into activities of daily life. Three themes—valuing non-acute concerns, feeling secure, and unmet expectations—have particular relevance to the design and use of web based tools for care of patients with diabetes and chronic medical conditions.
Conclusion Participants' experiences support further study of open access to the electronic medical record and online communication between patients and their care providers. The development of web based disease management programmes should take into account the specific needs and expectations of patients, and patients and providers should have candid discussions about what web based care can and cannot provide.
Introduction
The living with diabetes programme is a web based disease management module to support the care of patients with type 2 diabetes. A complete description of the module is given elsewhere.3 The programme targets four key domains in Wagner's chronic disease model: self management support for patients; delivery system design; clinical information systems; and clinical decision support (box). The web module itself consists of five web pages within a single secure website that allows patients and providers to communicate over the internet (see bmj.com).
The living with diabetes pilot study was run out of a general internal medicine clinic affiliated with the University of Washington; eight general internists were the primary care providers for the participants. All patients lived in the state of Washington, at distances ranging from 5 km to 480 km (3-291 miles) from the clinic. The study used a case manager model of chronic disease care.4 The case manager (a nurse practitioner) encouraged all patients to review their online medical record, upload blood glucose readings weekly, and send secure electronic mail as needed. For each patient in the study, providers responded to patients' messages Monday through Friday and reviewed uploaded blood glucose levels at least once a week.
Most components of the module were available to participants throughout the study period. However, two components of the module were delayed. The ability to graphically view blood glucose levels at home was not available until month 4 and the "my diabetes daily diary" did not became fully functional until month 6 of the pilot.
Using convenience sampling, we approached 35 patients at the general internal medicine clinic. Fifteen of those approached agreed to participate in the feasibility trial. For the qualitative study, we used purposive sampling to identify a subpopulation of 10 patients from the 15 originally recruited. In selecting these 10 patients we sought to ensure a range of patient characteristics including age, sex, years with diabetes, and distance from the clinic.5 One patient subsequently dropped out of the programme and could not be reached for follow up after the first interview. The remaining nine patients (six men) made up the study sample. Participants were aged 43-65 (median 58) years and had had type 2 diabetes for one to 14 (median four) years. Eight were married or had partners, one was single; two had high school education, one college education, and four graduate school education; eight were white and one was African-American. Patients' degree of interaction with the programme varied. Some patients used it only a few times through the entire six month study period; others used it several times a week.
We interviewed the nine participants twice between October 2001 and December 2002—before and six months after enrolment in the programme. Interviews were semistructured and in-depth, and were carried out in patients' homes. In the first interview, the interviewer (JDR) asked participants about their interest in participating in the programme. Follow up questions explored and clarified the content of the programme and asked about the anticipated impact of the programme on participants' experience with diabetes and their relationship with their providers. Six months after the start of the programme, participants were interviewed a second time (by JDR). In the second interview, participants were first asked to describe their experiences with the programme. Follow up questions explored and clarified the content of participants' responses. Participants were also asked about their perception of any impact the programme had had on their life with diabetes and their relationship with their primary care provider. Interviews ranged from 60 to 80 minutes. All interviews were audio taped, transcribed verbatim, and manually edited by the interviewer while listening to the tape of the interview.
Design of the living with diabetes management programme (domains and interventions)
Self management support
Promoted patient review of the electronic medical record at home over the web through My Health Record, a real-time view of the same record and interface used by providers and containing all clinical data since January 199422
Provided remote collaboration and interactive feedback on automatically uploaded blood glucose readings over the internet through My Upload Meter
Provided remote collaboration and interactive feedback on nutrition, medications, and exercise using a web based self management tool, My Diabetes Daily Diary
Promoted and integrated secure email into ongoing care with diabetes case manager
Provided general diabetes educational website with links to information endorsed by the medical director of the University of Washington Diabetes Care Center
Delivery system design
Used case manager model23
Provided initial weekly follow up over the web for blood glucose levels and other self management needs
Provided subsequent proactive follow up based on patient needs
Promoted and integrated secure email exchanges into ongoing care
Promoted and integrated patients' blood glucose and lifestyle information into ongoing care
Clinical information systems
Provided ongoing tracking and documentation of patients' evidence based needs and care
Used secure email integrated as part of the record
Decision support
Used an interactive electronic medical record for collaborative decision support shared by both patient and provider:
Clinical reminders visible to both patient and provider
Single page summary of patient's clinical information relevant to diabetes
Established provider decision support through patients' remote transmission of blood glucose readings, daily diary inputs, and secure email exchanges
Transcripts from the two interviews were independently read and analysed for common themes by two investigators (JDR, DR) in an approach informed by phenomenology.6-9 One coder was a physician and the other a psychologist. These authors met repeatedly to discuss themes and resolve discrepancies in thematic definitions. If new codes emerged, the codebook was modified and transcripts reread and recoded according to the clarified definitions. Micro codes were consolidated into major themes representing patients' experience. In a third round of interviews with six of the nine participants, these themes were reviewed and further clarified. These six participants were selected during the first two interviews for their ability to describe their lives with diabetes and their interactions with the module. We used QSR-NUD*IST qualitative data analysis software to manually record and compare coding of transcripts.
In our analysis, we sought to represent participants' actual experience of the programme by closely analysing their narrative descriptions of their hopes and interactions with the project. Rather than approach the narrative data with preconceived notions about what it might contain, we allowed themes to emerge from the data themselves.
Results
Three themes emerged as important to the design and evaluation of web based care programmes. Firstly, the living with diabetes programme provided a unique environment where participants' chronic concerns were actively valued. Previous work has documented how our systems of care are poorly designed to meet the needs of patients with chronic illness.2 10
Our findings show that web based programmes such as ours may be particularly successful at dealing with those needs. Secondly, patients experienced an enhanced sense of security about their health and health care. This improved sense of security may promote healthy behaviours and better quality of life in patients with diabetes.11 Finally, participants were profoundly disappointed when their expectations for the technology and communications of the programme were not met. Studies have shown that meeting patients' expectations is important not only for patient satisfaction but also for achieving better resolution of symptoms and reducing further use of healthcare resources.12 Conversations with patients about their expectations for care can be challenging for doctors during office visits13; our study shows that it may be even more difficult to understand and address these expectations in web based health care.
The living with diabetes programme provided participants with a connection to providers and healthcare information that was different from their usual healthcare experience. Instead of episodic connections with providers at office visits, a provider was a continuous presence that watched benevolently from a distance as participants engaged in the daily activities of managing their diabetes. Having access to the electronic medical record, and particularly the results of medical testing, was also important to patients. This is consistent with several studies that have shown the value of promoting patient review of the medical record as part of effective management.14-20 interventions in chronic disease
What is already known on this topic
Web based programmes for management of chronic diseases can shift the focus in health care away from the office and towards patients' daily lives at home
Little is known about the impact of using the web in the clinical care of patients with chronic disease
What this study adds
Web based disease programmes can fill an important gap in how health care is currently provided for patients with chronic medical conditions
Programmes that include online communications and open access to the electronic medical record warrant further study in larger trials
Before and during the use of web based chronic care, patients and providers should discuss what the programme can and cannot deliver
Patients' experience with the living with diabetes programme supports further study of web based programmes that are tightly integrated into patients' overall clinical care. A recent trial looking at web based support for self management of diabetes, separate from patients' usual care, showed that patients benefited from basic web services including general information, automated dietary goal setting, and periodic online assessments. In that trial, adding tailored self management did not show any benefit. Our results are consistent with the authors' conclusions, that benefit from tailored self management in web based diabetes care may require programmes that have stronger links to patients' existing clinical care.21
Limitations
Our study has a few limitations. Firstly, it is a pilot study in an academic medical centre; a community setting might have provided different findings. Because the interviewer was a doctor, patients may have responded differently than they would to a non-medical interviewer. Lastly, patients who either declined to participate or who were not approached about participating might have had different experiences with the programme than those who participated.
Conclusion and implications
Web based chronic care programmes have unique potential to shift care processes towards more continuous collaborative relationships between patients and providers. Our work supports further study of web based diabetes programmes that include online communications and open access to the electronic medical record. Our study also contributes to thinking about how to design future programmes. In particular, our themes highlight the importance of accounting for individual patients' needs. Before and during the use of web based chronic care, patients and providers should have candid discussions about what the programme can and cannot deliver.
Screen shots of the web links module are on bmj.com
Contributors: JDR, HIG, and LSR conceived and designed the study. JDR, DR, and LSR analysed and interpreted the data. All authors helped prepare and revise the manuscript and reviewed the manuscript before submission and publication. JDR is guarantor.
Funding: This study was supported by the Aetna Quality Care Research Fund and the Center for Health Management Research. JD Ralston was additionally supported by a General Medicine Research Fellowship, National Research Service Award grant PHS-5-T-32 PE-10002-10 from the National Institutes of Health, Bethesda, Maryland. All investigators are independent of funders for this study.
Competing interests: None declared.
Ethical approval: University of Washington Institutional Review Board.
References
Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press, 2001.
Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002;288: 1775-9.
Goldberg HI, Ralston JD, Hirsch IB, Hoath JI, Ahmed KI. Using an internet comanagement module to improve the quality of chronic disease care. Joint Commission J Qual Saf 2003;29: 443-51.
Aubert RE, Herman WH, Waters J, Moore W, Sutton D, Peterson BL, et al. Nurse case management to improve glycemic control in diabetic patients in a health maintenance organization. A randomized, controlled trial. Ann Intern Med 1998;129: 605-12.
Brim JA, Spain DH. Research design in anthropology: paradigms and pragmatics in the testing of hypotheses. New York: Holt, Rinehart and Winston, 1974.
Giorgi A. Phenomenology and psychological research. Pittsburgh, PA: Duquesne University Press, 1985.
Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet 2001;358: 483-8.
Morse JM, Field PA. Qualitative research methods for health professionals. Thousand Oaks, CA: Sage Publications, 1995.
Denzin NK, Lincoln YS, eds. Strategies of qualitative inquiry. Thousand Oaks, CA: Sage Publications, 1998.
Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff (Millwood) 2001;20(6): 64-78.
Kawachi I, Berkman LF. Social epidemiology. New York: Oxford University Press, 2000.
Bell RA, Kravitz RL, Thom D, Krupat E, Azari R. Unmet expectations for care and the patient-physician relationship. J Gen Intern Med 2002;17: 817-24.
Clever SL, Tulsky JA. Dreaded conversations: moving beyond discomfort in patient-physician communication. J Gen Intern Med 2002;17: 884-5.
Greenfield S, Kaplan S, Ware JE, Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med 1985;102: 520-8.
Greenfield S, Kaplan SH, Ware JE Jr, Yano EM, Frank HJ. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med 1988;3: 448-57.
Maly RC, Bourque LB, Engelhardt RF. A randomized controlled trial of facilitating information giving to patients with chronic medical conditions: effects on outcomes of care. J Fam Pract 1999;48: 356-63.
Bronson DL, Costanza MC, Tufo HM. Using medical records for older patient education in ambulatory practice. Med Care 1986;24: 332-9.
Bronson DL, O'Meara K. The impact of shared medical records on smoking awareness and behavior in ambulatory care. J Gen Intern Med 1986;1: 34-7.
Bronson DL, Rubin AS, Tufo HM. Patient education through record sharing. QRB Qual Rev Bull 1978;4(12): 2-4.
Rachmani R, Levi Z, Slavachevski I, Avin M, Ravid M. Teaching patients to monitor their risk factors retards the progression of vascular complications in high-risk patients with Type 2 diabetes mellitus—a randomized prospective study. Diabet Med 2002;19: 385-92.
Glasgow RE, Boles SM, McKay HG, Feil EG, Barrera M. The D-Net diabetes self-management program: long-term implementation, outcomes, and generalization results. Prev Med 2003;36: 410-9.
Goldberg HI, Tarczy-Hornoch P, Stephens K, Larson EB, LoGerfo JP. Internet access to patients' records . Lancet 1998;351: 1811.
Aubert RE, Herman WH, Waters J, Moore W, Sutton D, Peterson BL, et al. Nurse case management to improve glycemic control in diabetic patients in a health maintenance organization: a randomized, controlled trial. Ann Intern Med 1998;129: 605-12.(James D Ralston, assistan)
Correspondence to: J D Ralston ralston.j@ghc.org
Abstract
Objective To describe the experiences of patients with type 2 diabetes in a web based disease management programme based on an interactive electronic medical record.
Design Qualitative analysis of semistructured interviews with patients enrolled in a diabetes care module that included access to their electronic medical record, secure email, ability to upload blood glucose readings, an education site with endorsed content, and an interactive online diary for entering exercise, diet, and medication.
Setting Patients' homes in Washington state, United States.
Participants Nine participants aged 45-65 completed interviews before and after they used the programme.
Results Six themes emerged: feeling that non-acute concerns are uniquely valued; enhanced sense of security about health and health care; frustration with unmet expectations; feeling more able to manage; valuing feedback; and difficulty fitting the programme into activities of daily life. Three themes—valuing non-acute concerns, feeling secure, and unmet expectations—have particular relevance to the design and use of web based tools for care of patients with diabetes and chronic medical conditions.
Conclusion Participants' experiences support further study of open access to the electronic medical record and online communication between patients and their care providers. The development of web based disease management programmes should take into account the specific needs and expectations of patients, and patients and providers should have candid discussions about what web based care can and cannot provide.
Introduction
The living with diabetes programme is a web based disease management module to support the care of patients with type 2 diabetes. A complete description of the module is given elsewhere.3 The programme targets four key domains in Wagner's chronic disease model: self management support for patients; delivery system design; clinical information systems; and clinical decision support (box). The web module itself consists of five web pages within a single secure website that allows patients and providers to communicate over the internet (see bmj.com).
The living with diabetes pilot study was run out of a general internal medicine clinic affiliated with the University of Washington; eight general internists were the primary care providers for the participants. All patients lived in the state of Washington, at distances ranging from 5 km to 480 km (3-291 miles) from the clinic. The study used a case manager model of chronic disease care.4 The case manager (a nurse practitioner) encouraged all patients to review their online medical record, upload blood glucose readings weekly, and send secure electronic mail as needed. For each patient in the study, providers responded to patients' messages Monday through Friday and reviewed uploaded blood glucose levels at least once a week.
Most components of the module were available to participants throughout the study period. However, two components of the module were delayed. The ability to graphically view blood glucose levels at home was not available until month 4 and the "my diabetes daily diary" did not became fully functional until month 6 of the pilot.
Using convenience sampling, we approached 35 patients at the general internal medicine clinic. Fifteen of those approached agreed to participate in the feasibility trial. For the qualitative study, we used purposive sampling to identify a subpopulation of 10 patients from the 15 originally recruited. In selecting these 10 patients we sought to ensure a range of patient characteristics including age, sex, years with diabetes, and distance from the clinic.5 One patient subsequently dropped out of the programme and could not be reached for follow up after the first interview. The remaining nine patients (six men) made up the study sample. Participants were aged 43-65 (median 58) years and had had type 2 diabetes for one to 14 (median four) years. Eight were married or had partners, one was single; two had high school education, one college education, and four graduate school education; eight were white and one was African-American. Patients' degree of interaction with the programme varied. Some patients used it only a few times through the entire six month study period; others used it several times a week.
We interviewed the nine participants twice between October 2001 and December 2002—before and six months after enrolment in the programme. Interviews were semistructured and in-depth, and were carried out in patients' homes. In the first interview, the interviewer (JDR) asked participants about their interest in participating in the programme. Follow up questions explored and clarified the content of the programme and asked about the anticipated impact of the programme on participants' experience with diabetes and their relationship with their providers. Six months after the start of the programme, participants were interviewed a second time (by JDR). In the second interview, participants were first asked to describe their experiences with the programme. Follow up questions explored and clarified the content of participants' responses. Participants were also asked about their perception of any impact the programme had had on their life with diabetes and their relationship with their primary care provider. Interviews ranged from 60 to 80 minutes. All interviews were audio taped, transcribed verbatim, and manually edited by the interviewer while listening to the tape of the interview.
Design of the living with diabetes management programme (domains and interventions)
Self management support
Promoted patient review of the electronic medical record at home over the web through My Health Record, a real-time view of the same record and interface used by providers and containing all clinical data since January 199422
Provided remote collaboration and interactive feedback on automatically uploaded blood glucose readings over the internet through My Upload Meter
Provided remote collaboration and interactive feedback on nutrition, medications, and exercise using a web based self management tool, My Diabetes Daily Diary
Promoted and integrated secure email into ongoing care with diabetes case manager
Provided general diabetes educational website with links to information endorsed by the medical director of the University of Washington Diabetes Care Center
Delivery system design
Used case manager model23
Provided initial weekly follow up over the web for blood glucose levels and other self management needs
Provided subsequent proactive follow up based on patient needs
Promoted and integrated secure email exchanges into ongoing care
Promoted and integrated patients' blood glucose and lifestyle information into ongoing care
Clinical information systems
Provided ongoing tracking and documentation of patients' evidence based needs and care
Used secure email integrated as part of the record
Decision support
Used an interactive electronic medical record for collaborative decision support shared by both patient and provider:
Clinical reminders visible to both patient and provider
Single page summary of patient's clinical information relevant to diabetes
Established provider decision support through patients' remote transmission of blood glucose readings, daily diary inputs, and secure email exchanges
Transcripts from the two interviews were independently read and analysed for common themes by two investigators (JDR, DR) in an approach informed by phenomenology.6-9 One coder was a physician and the other a psychologist. These authors met repeatedly to discuss themes and resolve discrepancies in thematic definitions. If new codes emerged, the codebook was modified and transcripts reread and recoded according to the clarified definitions. Micro codes were consolidated into major themes representing patients' experience. In a third round of interviews with six of the nine participants, these themes were reviewed and further clarified. These six participants were selected during the first two interviews for their ability to describe their lives with diabetes and their interactions with the module. We used QSR-NUD*IST qualitative data analysis software to manually record and compare coding of transcripts.
In our analysis, we sought to represent participants' actual experience of the programme by closely analysing their narrative descriptions of their hopes and interactions with the project. Rather than approach the narrative data with preconceived notions about what it might contain, we allowed themes to emerge from the data themselves.
Results
Three themes emerged as important to the design and evaluation of web based care programmes. Firstly, the living with diabetes programme provided a unique environment where participants' chronic concerns were actively valued. Previous work has documented how our systems of care are poorly designed to meet the needs of patients with chronic illness.2 10
Our findings show that web based programmes such as ours may be particularly successful at dealing with those needs. Secondly, patients experienced an enhanced sense of security about their health and health care. This improved sense of security may promote healthy behaviours and better quality of life in patients with diabetes.11 Finally, participants were profoundly disappointed when their expectations for the technology and communications of the programme were not met. Studies have shown that meeting patients' expectations is important not only for patient satisfaction but also for achieving better resolution of symptoms and reducing further use of healthcare resources.12 Conversations with patients about their expectations for care can be challenging for doctors during office visits13; our study shows that it may be even more difficult to understand and address these expectations in web based health care.
The living with diabetes programme provided participants with a connection to providers and healthcare information that was different from their usual healthcare experience. Instead of episodic connections with providers at office visits, a provider was a continuous presence that watched benevolently from a distance as participants engaged in the daily activities of managing their diabetes. Having access to the electronic medical record, and particularly the results of medical testing, was also important to patients. This is consistent with several studies that have shown the value of promoting patient review of the medical record as part of effective management.14-20 interventions in chronic disease
What is already known on this topic
Web based programmes for management of chronic diseases can shift the focus in health care away from the office and towards patients' daily lives at home
Little is known about the impact of using the web in the clinical care of patients with chronic disease
What this study adds
Web based disease programmes can fill an important gap in how health care is currently provided for patients with chronic medical conditions
Programmes that include online communications and open access to the electronic medical record warrant further study in larger trials
Before and during the use of web based chronic care, patients and providers should discuss what the programme can and cannot deliver
Patients' experience with the living with diabetes programme supports further study of web based programmes that are tightly integrated into patients' overall clinical care. A recent trial looking at web based support for self management of diabetes, separate from patients' usual care, showed that patients benefited from basic web services including general information, automated dietary goal setting, and periodic online assessments. In that trial, adding tailored self management did not show any benefit. Our results are consistent with the authors' conclusions, that benefit from tailored self management in web based diabetes care may require programmes that have stronger links to patients' existing clinical care.21
Limitations
Our study has a few limitations. Firstly, it is a pilot study in an academic medical centre; a community setting might have provided different findings. Because the interviewer was a doctor, patients may have responded differently than they would to a non-medical interviewer. Lastly, patients who either declined to participate or who were not approached about participating might have had different experiences with the programme than those who participated.
Conclusion and implications
Web based chronic care programmes have unique potential to shift care processes towards more continuous collaborative relationships between patients and providers. Our work supports further study of web based diabetes programmes that include online communications and open access to the electronic medical record. Our study also contributes to thinking about how to design future programmes. In particular, our themes highlight the importance of accounting for individual patients' needs. Before and during the use of web based chronic care, patients and providers should have candid discussions about what the programme can and cannot deliver.
Screen shots of the web links module are on bmj.com
Contributors: JDR, HIG, and LSR conceived and designed the study. JDR, DR, and LSR analysed and interpreted the data. All authors helped prepare and revise the manuscript and reviewed the manuscript before submission and publication. JDR is guarantor.
Funding: This study was supported by the Aetna Quality Care Research Fund and the Center for Health Management Research. JD Ralston was additionally supported by a General Medicine Research Fellowship, National Research Service Award grant PHS-5-T-32 PE-10002-10 from the National Institutes of Health, Bethesda, Maryland. All investigators are independent of funders for this study.
Competing interests: None declared.
Ethical approval: University of Washington Institutional Review Board.
References
Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press, 2001.
Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002;288: 1775-9.
Goldberg HI, Ralston JD, Hirsch IB, Hoath JI, Ahmed KI. Using an internet comanagement module to improve the quality of chronic disease care. Joint Commission J Qual Saf 2003;29: 443-51.
Aubert RE, Herman WH, Waters J, Moore W, Sutton D, Peterson BL, et al. Nurse case management to improve glycemic control in diabetic patients in a health maintenance organization. A randomized, controlled trial. Ann Intern Med 1998;129: 605-12.
Brim JA, Spain DH. Research design in anthropology: paradigms and pragmatics in the testing of hypotheses. New York: Holt, Rinehart and Winston, 1974.
Giorgi A. Phenomenology and psychological research. Pittsburgh, PA: Duquesne University Press, 1985.
Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet 2001;358: 483-8.
Morse JM, Field PA. Qualitative research methods for health professionals. Thousand Oaks, CA: Sage Publications, 1995.
Denzin NK, Lincoln YS, eds. Strategies of qualitative inquiry. Thousand Oaks, CA: Sage Publications, 1998.
Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff (Millwood) 2001;20(6): 64-78.
Kawachi I, Berkman LF. Social epidemiology. New York: Oxford University Press, 2000.
Bell RA, Kravitz RL, Thom D, Krupat E, Azari R. Unmet expectations for care and the patient-physician relationship. J Gen Intern Med 2002;17: 817-24.
Clever SL, Tulsky JA. Dreaded conversations: moving beyond discomfort in patient-physician communication. J Gen Intern Med 2002;17: 884-5.
Greenfield S, Kaplan S, Ware JE, Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med 1985;102: 520-8.
Greenfield S, Kaplan SH, Ware JE Jr, Yano EM, Frank HJ. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med 1988;3: 448-57.
Maly RC, Bourque LB, Engelhardt RF. A randomized controlled trial of facilitating information giving to patients with chronic medical conditions: effects on outcomes of care. J Fam Pract 1999;48: 356-63.
Bronson DL, Costanza MC, Tufo HM. Using medical records for older patient education in ambulatory practice. Med Care 1986;24: 332-9.
Bronson DL, O'Meara K. The impact of shared medical records on smoking awareness and behavior in ambulatory care. J Gen Intern Med 1986;1: 34-7.
Bronson DL, Rubin AS, Tufo HM. Patient education through record sharing. QRB Qual Rev Bull 1978;4(12): 2-4.
Rachmani R, Levi Z, Slavachevski I, Avin M, Ravid M. Teaching patients to monitor their risk factors retards the progression of vascular complications in high-risk patients with Type 2 diabetes mellitus—a randomized prospective study. Diabet Med 2002;19: 385-92.
Glasgow RE, Boles SM, McKay HG, Feil EG, Barrera M. The D-Net diabetes self-management program: long-term implementation, outcomes, and generalization results. Prev Med 2003;36: 410-9.
Goldberg HI, Tarczy-Hornoch P, Stephens K, Larson EB, LoGerfo JP. Internet access to patients' records . Lancet 1998;351: 1811.
Aubert RE, Herman WH, Waters J, Moore W, Sutton D, Peterson BL, et al. Nurse case management to improve glycemic control in diabetic patients in a health maintenance organization: a randomized, controlled trial. Ann Intern Med 1998;129: 605-12.(James D Ralston, assistan)