Personal health records for researchers

Latest papers

Below are the latest 15 papers from PubMed:

Key papers

Below are the key papers that have been reviewed on the Wiki using the review of paper template.

• Early experiences with personal health records. Halamka et. al, JAMIA 2008. Nice list of important patient portals and their results.
• The patient and his problem-oriented record. In: Implementing the problem-oriented system. Bouchard RE, Eddy WM, Tufo HM, et al, 1973. This is one of the earliest examples of giving patients copies of their medical records.
  
• Improving health care by understanding patient preferences: the role of computer technology Brennan et. al, JAMIA, 1998. Nice list of project tracking patient preferences.
• Design and implementation of a comprehensive outpatient Results Manager. Poon et. al, J Biomed Inform 2003. A full-time primary care physician on average reviews 930 pieces of chemistry/hematology data and 60 pathology or radiology reports in a typical week.
• Traditional medical records as a source of clinical data in the outpatient setting. Tang et. al, Proc Annu Symp Comput Appl Med Care 1994. In 81 percent of the cases, physicians could not find all the patient information that they desired during a patient's visit.
• Ross, SE & Lin, CT 2003, ‘The effects of promoting patient access to medical records: a review’, Journal of the American Medical Informatics Association, vol. 10, pp. 129 –138.Excellent review of the literature.
  

Other papers by topic

• Regional Health Information Organizations (RHIOs)
• Abbott, S, Johnson, L & Lewis, H 2001, ‘Participation in Arranging Continuing Health Care Packages: Experiences and Aspirations of Service Users’, Journal of Nursing Management, vol. 9, pp. 79-85.
• Connecting for Health 2004, ‘Connecting Americans to their Healthcare. Final Report of the Working Group on Policies for Electronic Information Sharing Between Doctors and Patients’, Markle Foundation. Characteristics of an ideal PHR.
  
• Pyper, C, Amery, J, Watson, M & Crook, C 2004, ‘Patients’ experiences when accessing their on-line electronic patient records in primary care’, British Journal of General Practice, vol. 54, pp. 38-43.
• Ralston, JD, Carrell, D, Reid, R, Anderson, M, Moran, M & Hereford, J 2007 ‘Patient web services integrated with a shared medical record: patient use and satisfaction’ Journal of the American Medical Informatics Association, vol. 14, pp. 798-806.

Papers to review

1. Alemi, F 1998, ‘Virtual managed care organizations: the implications of technology based patient management’, American Journal of Managed Care, vol. 4, pp. 415-418.
2. Balas, EA; Austin, SM; Mitchell, JA, Ewigman, BG, Bopp, KD & Brown, GD 1996, ‘The clinical value of computerized information services. A review of 98 randomized clinical trials’, Archives of Family Medicine vol. 5, pp. 271-278.
3. Balas, EA, Jaffrey, F, Kuperman, GJ, Boren, SA, GD, Brown, Pinciroli, F & Mitchell, JA 1997, ‘Electronic communication with patients – evaluation of distance medicine technology’, Journal of the American Medical Association vol. 278, pp. 152-159.
4. Ball, MJ & Gold, J 2007, ‘Banking on Health: Personal Records and Information Exchange’, Journal of Healthcare Information Management, vol. 20, pp. 71-83.
5. Barry, MJ 1999, ‘Involving patients in medical decisions: how can physicians do better?’ Journal of the American Medical Association vol. 282, pp. 2356-7.
6. Berners-Lee, T, Hendler, J & Lassila, O 2001 ‘The Semantic Web. a new form of Web content that is meaningful to computers will unleash a revolution of new possibilities’, Scientific American [serial online], vol. 284 no. 5.
7. Borowitz, SM & Wyatt, JC 1998, ‘The origin, content, and workload of e-mail consultations’ Journal of the American Medical Association vol. 280, pp. 1321-4.
8. Brennan, PF 1999, ‘Health informatics and community health: support for patients as collaborators in care’, Methods of Informatics in Medicine, vol.38, pp. 274-8.
9. Cheung, N-T, Fung, V, Wong, WN, Tong, A, Sek, A, Greyling, A, Tse, N & Fung H 2007, ‘Principles-based medical informatics for success – how Hong Kong built one of the world's largest integrated longitudinal electronic patient records’ Medinfo, vol. 12, pp. 307-10.
10. Cimino, JJ, Patel, VL & Kushniruk, AW 2002, ‘The patient clinical information system (PatCIS): technical solutions for and experiences with giving patients access to their electronic medical records’, International Journal of Medical Informatics, vol. 68, pp. 113-127
11. Clamp, S & Keen, J 2007, ‘Electronic health records: is the evidence base any use?’ Medical Informatics & the Internet in Medicine, vol. 32, pp. 5-10.
12. Dazzi, L, Fassino, C, Saracco, R, Quaglini, S & Stefanelli, M 1997, ‘A patient workflow management system built on guidelines’, Proceedings of AMIA Annual Fall Symposium, 1997, pp. 146-50.
13. de Clercq, PA, Hasman, A & Wolffenbuttel, BH 2001, ‘Design of a consumer health record for supporting the patient-centered management of chronic diseases’, Medinfo vol. 10, pp. 1445-9.
14. Detmer, MD & Steen MA 2006, ‘Learning from Abroad: Lessons and Questions on Personal Health Records for National Policy’, Washington American Association for Retired Persons (AARP) Public Policy Institute. URL: <http://www.esi-bethesda.com/ncrrwork...d_DED_AARP.pdf>
15. Elwyn, G, Edwards, A, Gwyn, R & Grol, R 1999, ‘Towards a feasible model for shared decision making: focus group study with general practice registrars’, British Medical Journal, vol. 319, pp. 753-6.
16. Fisher, B, Fitton, R, Poirier, C & Stables, D 2007, ‘Patient record access – the time has come!’, British Journal of General Practice, vol. 57, pp. 507-11.
17. Friedman, RH, Kazis, LE, Jette, A, Smith, MB, Stollerman, J, Torgerson, J & Carey, K 1996, ‘A telecommunications system for monitoring and counseling patients with hypertension. Impact on medication adherence and blood pressure control’, American Journal of Hypertension, vol. 9, pp. 285-292.
18. Gerteis, M, Edgman-Levitan, S, Daley, J, Delbanco, T (eds). 1993 ‘Through the patient’s eyes: understanding and promoting patient-centred care’, Jossy-Bass Inc., San Francisco.
19. Giglio, RJ, Papazian, B 1987, ‘Acceptance and use of patient-carried health records’, Journal of the American Medical Records Association, vol. 58, pp. 32-36.
20. Gillespie, R, Florin, D & Gillam, S 2004, ‘How is patient-centred care understood by the clinical, managerial and lay stakeholders responsible for promoting this agenda?’ Health Expectations, vol. 7, pp. 142-148.
21. Greenhalgh, T, Stramer, K, Bratan, T, Byrne, E, Russell, J, Mohammad, Y, Wood, G & Hinder, S 2008, ‘Summary Care Record Early Adopter programme: An independent evaluation by University College London’, London: University College London. <www.ucl.ac.uk/openlearning/research>
22. Gustafson, DH, Bosworth, K, Hawkins, RP, Boberg, EW & Bricker, E 1992, ‘CHESS: a computer-based system for providing information, referrals, decision support and social support to people providing medical and other health-related crises’, Proceedings of the Annual Symposium of Computer Applications to Medical Care 1992, pp. 161-5.
23. Halamka, JD, Aranow, M, Ascenzo, C, Bates, D, Debor, G, Glaser, J, Goroll, A, Stowe, J, Tripathi, M & Vineyard, G 2005, ‘Health care IT collaboration in Massachusetts: the experience of creating regional connectivity’, Journal of the American Medical Informatics Association, vol. 12, pp. 596-601
24. Harrison-Broninski, K 2005, ‘Human interations: the Heart and Soul of Business Process Management’, Meghan-Kiffer Press, Tampa, Florida. ISBN 0-929652-44-4
25. Haynes, RB, Montague, P, Oliver, T, McKibbon, KA, Brouwers, MC & Kanani, R 2000, ‘Interventions for helping patients to follow prescriptions for medications (Cochrane Review)’, in The Cochrane Library, Issue 3, Update Software, Oxford.
26. International Alliance of Patients’ Organizations 2007 ‘What is Patient-centred Healthcare? A review of definitions and principles’, London UK. 2nd Edition <http://www.patientsorganizations.org>
27. Kaplan, B & Brennan, PF 2001, ‘Consumer informatics supporting patients as co-producers of quality’. Journal of the American Medical Informatics Association, vol.8, pp. 309-16.
28. Kim, MI & Johnson, KB 2002, ‘Personal Health Records: Evaluation of functionality and utility’, Journal of the
29. American Medical Informatics Association, vol. 9, pp. 171-180.
30. Kirby, BJ 1991, ‘Patient access to medical records’, Journal of the Royal College of Physicians of London, vol. 25, pp. 240-2.
31. Klein, M, Dellarocas, C & Bernstein, A 2000, &apos;Introduction to the Special Issue on Adaptive Workflow Systems&apos;, Computer Supported Cooperative Work, vol. 9, no. 3/4, pp. 265-267.
32. Kuszler, PC 2000, ‘A question of duty: Common law legal issues resulting from physician response to unsolicited patient email inquiries’, Journal of Medical Internet Research, vol. 2, p. e17.
33. Leydon, GM, Boulton, M, Moynihan, C, Jones, A, Mossman, J, Boudioni, M & McPherson K 2000, ‘Cancer patients’ information needs and information seeking behaviour: in depth interview study’, British Medical Journal, vol. 320, pp. 909-913.
34. Mandl, KD & Kohane, IS 2008, ‘Tectonic shifts in the health information economy’, New England Journal of Medicine, vol. 358 pp. 1732-37.
35. Mandl, KD, Kohane, IS & Brandt, AM 1998, ‘Electronic patient-physician communication: problems and promise’, Annals of Internal Medicine, vol. 129, pp. 495-500.
36. Mandl, KD, Simons, WW, Crawford, WCR & Abbett JM 2007, ‘Indivo: a personally controlled health record for health information exchange and communication’, BMC Medical Informatics & Decision Making, vol. 7, pp. 25.
37. Masys, D, Baker, D, Butros, A & Cowles, KE 2002, ‘Giving patients access to their medical records via the internet: the PCASSO experience’, Journal of the American Medical Informatics Association, vol. 9, pp. 181-191.
38. Meland, E, Laerum, E & Maeland JG 1996, ‘Life style intervention in general practice: effects on psychological well-being and patient satisfaction’, Quality of Life Research, vol. 5, pp. 348-354.
39. Mellins, RB, Evans, D, Clark, N, Zimmerman, B & Wiesemann, S 2000, ‘Developing and communicating a long-term treatment plan for asthma’, American Family Physician, vol. 61, pp. 2419-28, 2433-4.
40. Moen, A & Brennan, PF 2005, ‘Health@Home: the work of Health Information Management in the Household (HIMH): Implications for consumer health informatics (CHI) innovations’, Journal of the American Medical Informatics Association, vol. 12, pp. 648-656.
41. Pagliari, C, Detmer, D & Singleton, P 2007, ‘Potential of electronic personal health records’, British Medical Journal, vol. 335, pp. 330-333.
42. Pal, B 1999, ‘Email contact between doctor and patient’, British Medical Journal, vol. 318, p. 1428
43. Panzarasa, S, Madde, S, Quaglini, S, Pistarini, C & Stefanelli, M 2002, ‘Evidence-based careflow management systems: the case of postrehabilitation’, Journal of Biomedical Informatics, vol.35, pp. 123-139.
44. Peckover, S, Hall, C & White, S 2008, ‘From Policy to Practice: The Implementation and Negotiation of Technologies in Everyday Child Welfare’, Children & Society.
45. Robinson, TN, Patrick, K, Eng, TR & Gustafson, D 1998 ‘An evidence-based approach to interactive health communication’, Journal of the American Medical Association, vol. 280, pp. 1264-1269.
46. Schneider, JH 2001, ‘Online personal medical records: are they reliable for acute/critical care?’, Critical Care Medicine, 29, pp. N196-201.
47. Shabo, A 2006, ‘A global socio-economic-medico-legal model for the sustainability of longitudinal electronic health records - part 2.’, Methods of Information in Medicine, vol. 45, pp. 498-505.
48. Spielberg, AR 1998, ‘On call and online – sociohistorical, legal and ethical implications of e-mail for the patient-physician relationship’, Journal of the American Medical Association vol. 280, pp. 1353-1359.
49. Tang, PC, Ash, JS, Bates, DW, Overhage, JM & Sands, DZ 2006, ‘Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption’, Journal of the American Medical Informatics Association, vol. 13, pp. 121-126.
50. Tang, PC & Lansky, D 2005, ‘The missing link: bridging the patient - provider health information gap. Electronic personal health records could transform the patient–provider relationship in the twenty-first century’, Health Affairs (Millwood), vol. 24, pp.1290-5.
51. Tang, PC & Newcomb, C 1998, ‘Informing patients: a guide for providing patient health information’, Journal of the American Medical Informatics Association, vol. 5, pp. 563-70.
52. UK Department of Health 2004, ‘Patient and public involvement in health: the evidence for policy implementation’ London: UK Department of Health.
53. UK Department of Health 2006 ‘Our health, our care, our say: a new direction for community services’ London: UK Department of Health. <www.official-documents.gov.uk/ document/cm67/6737/6737.pdf>
54. USAID 1999, cited in WHO European Observatory Glossary <http://www.euro.who.int/observatory/...pPage?phrase=P>
55. van Woerkum, CM 2003, ‘The Internet and primary care physicians: coping with different expectations’, American Journal of Clinical Nutrition, vol.77, pp. 1016S-1018S.
56. Wald, JS, Rind, D, Safran, C, Kowaloff, H, Barker, R & Slack, WV 1995, ‘Patient entries in the electronic medical record: an interactive interview used in primary care’, Proceedings of the Annual Symposium on Computer Applications in Medical Care 1995, pp. 147-51
57. Wald, JS, Middleton, B, Bloom, A, Walmsley, D, Gleason, M, Nelson, E, Li, Q, Epstein, M, Volk, L & Bates, DW 2004, ‘A patient-controlled journal for an electronic medical record: issues and challenges’, Medinfo, vol. 11, pp. 1166-70.
58. Walker, JM 2005, ‘Electronic medical records and health care transformation’, Health Affairs, vol. 24, pp. 1118-20.
59. Wasson, JH, Stukel, TA, Weiss, JE, Hays, RD, Jette, AM & Nelson EC 1999 ‘A randomized trial of the use of patient self-assessment data to improve community practices’, Effective Clinical Practice, vol. 2, pp. 1-10.
60. WHO 2004, ‘General Principles of Good Chronic Care’ <http://www.who.int/3by5/publications...ples082004.pdf>
61. White, S, Hall, C, Peckover, S 2008, ‘The Descriptive Tyranny of the Common Assessment Framework: Technologies of Categorization and Professional Practice in Child Welfare’, British Journal of Social Work, advance Access published on April 16, 2008.
62. Winkelman, WJ & Leonard, KJ 2004, ‘Overcoming structural constraints to patient utilization of electronic medical records: a critical review and proposal for an evaluation framework’, Journal of the American Medical Informatics Association, vol. 11, pp. 151-161.
63. Winkelman, WJ, Leonard, KJ & Rossos, PG 2005, ‘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’, Journal of the American Medical Informatics Association, vol. 12, pp. 306-314.