1. Personal Health Records: Is there an impact on patient’s health? Introdução à Medicina Turma 11 2009/2010

2. Key-words Personal Health Records; Personal Child Health Records; PHR; Health Impact.

3. Personal Health Records – PHRs  An electronic application through which individuals can access, manage and share their health information in a private, secure and confidential environment.

4. They differ from electronic health records because the main manager is the patient himself, instead of health care professionals or health institutions [1]. PHRs [1] Tang, P., et al., Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association, 2006. 13(2): p. 121-126.

5. Potential functions of PHRs [3,4] Access to user's electronic clinical record (summary or detailed) Personal health organizer or diary Self management support Links to sources of support Personal Health Reminders Capture of symptom or health behavior data Health information exchange Telehealth Decision support [3] Pagliari, C., D. Detmer, and P. Singleton, Potential of electronic personal health records. British Medical Journal, 2007. 335(7615): p. 330. [4] Johnston, D., et al. A framework and approach for assessing the value of personal health records (PHRs). 2007: American Medical Informatics Association.

6.  Need for clinical history of the patient for more accurate diagnosis or treatment-related decisions.  They can help prevent medical error and improve doctor/patient relationship [5].  Perceived as the tool to empower consumers to become active decision-makers of their healthcare [2, 8]. [2] Ball, M., N. Carla Smith, and R. Bakalar, Personal health records: empowering consumers. Journal of Healthcare Information Management—Vol. 21(1): p. 77. [5] George, J. and P. Bernstein, Using electronic medical records to reduce errors and risks in a prenatal network. Current Opinion in Obstetrics and Gynecology, 2009. 21: p. 000-000. [8] Raisinghani, M. and E. Young, Personal health records: key adoption issues and implications for management. International Journal of Electronic Healthcare, 2008. 4(1): p. 67-77. Background

7. Personal Background [6] Akber, A. and T. Gough, TeleHealth paradigm for Kuwait's healthcare. Logistics Information Management, 2003. 16(3/4): p. 229-245. [6]

8. Factors Privacy [11] Costs [10] Accuracy of information [13] Utility [10] Efficiency [10] Simplicity of use [12] Background [11] Wright, A. and D. Sittig, Encryption characteristics of two USB-based personal health record devices. Journal of the American Medical Informatics Association, 2007. 14(4): p. 397-399. [12]Lober, W., et al. Barriers to the use of a personal health record by an elderly population. 2006: American Medical Informatics Association. [13] Wuerdeman, L., et al. How Accurate is Information that Patients Contribute to their Electronic Health Record? 2005: American Medical Informatics Association.

9. Justification  PHRs are becoming an increasingly important research subject in medical informatics.  The PHRs in use or in development today support a myriad of different functions, advantages and disadvantages and consequently offer different value propositions [4]. [4] Johnston, D., et al. A framework and approach for assessing the value of personal health records (PHRs). 2007: American Medical Informatics Association.

10.  The increasing mobility of the population and their health care providers, allied to the current complexity of care delivered, make PHRs valuable in the development of health care. Justification

11. "Does the use of PHRs improve the health of their users?"

12. Aim  Comprehend the impact of PHR on patient’s health, according to variables such as  Study type  PHR’s characteristics  Patient’s description, health status, opinion and response  Costs  Doctor-patient communication

13. Methods  Study participants  Original articles that evaluate the impact of PHRs

14.  Study Design: Systematic Review Methods

16.  Data collection methods No hand search of references was performed. 698 articles (on 4 th of March) ScopusPubmedISI

17. Methods MeSH Terms "personal health record"[all fields] OR “PERSONAL HEALTH RECORDS” OR "personal child health record"[All fields] OR "personal child health records"[All fields]

18. Data BaseCriteriaArticles and conference papers Pubmed Clinical Trial, Case Reports, Randomized Controlled Trial, Classical Article, Clinical Conference, Clinical Trial - Phase I, Clinical Trial - Phase II, Clinical Trial - Phase III, Clinical Trial - Phase IV, Comparative Study, Controlled Clinical Trial, Corrected and Republished Article, English Abstract, Evaluation Studies, Introductory Journal Article, Journal Article, Multicenter Study and only Portuguese or English articles. 266 articles obtained. Scopus Articles or conference papers.280 articles obtained. ISI Abstract and meetings in English.162 articles obtained.  Limits Methods

21. The search was performed and the results of all the databases gathered in an Endnote file, the articles ordered by title. Those repeated were eliminated, which meant cutting down from 698 articles to 371. An additional set of 13 articles were excluded, due to being older than 1990. Methods

22. The 358 articles were split in 5 groups of 2 students each that preformed a primitive selection by reading titles and abstracts and applying the inclusion and exclusion criteria. 119 articles were included and 155 excluded, the remaining underwent further selection. Whenever the group disagreed on the inclusion/exclusion of a certain article, a third reviser would be the judge. During this stage, 43 articles were excluded and 39 were included, resulting in a sample of 158 articles to be fully read.

23. Methods Therefore, of a total of 362 articles, the revisers agreed in 268, leading 94 articles to a third scrutiny. K  0,48

24. The 158 articles obtained were confronted with a number of parameters which aided us in assessing the real impact of PHRs on patients’ health. Methods

25. While reading the full-texts, further exclusion took place, due to factors such as the language, the study type (some were reviews, which were excluded) and the inability to answer our variables. Some full-texts were unavailable, even after contacting the article’s author. Therefore, our final sample of articles was reduced to 45. Methods

27.  Impact variables VariablesQuestion Study Type of study Study duration Year of publication Number of participants PHR’s characteristics Data and PHR Access Type of system Free of charge? PHR’s supplier PHR’s tools Does the PHR include analytical tools and decision support routines? Emergency Access Is there a function making PHR information available in emergencies? Data Re-use Can PHR data be used for research purposes? Health entities Is the use of PHRs encouraged by health entities? Illnesses Are they more useful in the treatment of certain illnesses?

28. VariablesQuestion Patients’ description Nationality Age How did the patient come into contact with the PHR? Patients’ Health Status Decreased visits to the physician’s office? Decreased visits to the emergency department? Decreased hospitalizations? Decreased mortality rate? Others Patients’ opinion PHR’s Safety PHR’s Utility Easy access to PHR? Patients’ response Did the patients start managing actively their own health? More accurate use of medication Costs Was there a reduction in healthcare costs? Communication Has the patient-doctor relationship improved? Methods

29.  Statistic analysis  SPSS® version 17  We obtained the frequencies of all variables created  Several one sample t-tests were performed to evaluate how close to reality were these frequencies. We considered as statistically significant results with p<0,05.  In order to study the association between our variables, we applied chi-square tests. Again, results with p<0,05 were reckoned as statistically significant.

30. Results  We got results from 45 papers, within a group of 158 researched.  The median of participants in each paper was 165, with an interquartil range of 50 to 610.

31. Results  Variable: Study characteristics VariableAnswersFrequency (n) Type of study Research support1 Case control1 Comparative 2 Conference 2 Original article 2 Cross-sectional 2 Preliminary study 2 Cohort5 Clinical trial7 Survey11 Missing9 Year of publication <20004 2000-20048  200532

32. Results  Variable: PHR’ characteristics – Data and PHR access VariableAnswersFrequency (n) Type of system Pen2 Paper-based7 Internet25 Missing10 Free of charge? Yes25 No4 Missing15 PHR’s supplier Public19 Private10 Missing15

33. Results  Variable: PHR’ characteristics – PHR’s tools VariableAnswersFrequency (n) Analytical tools and decision support routines None4 Allergies4 Insurance information 5 Laboratory tests5 Patient description5 Medication9 Missing12

34. Results  Variable: PHR’ characteristics – Emergency access VariableAnswersFrequency (n) Emergency availability Yes11 No5 Missing28

35. Results  Variable: PHR’ characteristics – Data re-use VariableAnswersFrequency (n) Use for research Yes16 No6 Missing22

36. Results  Variable: PHR’ characteristics – Health entities VariableAnswersFrequency (n) Encouragement from health entities Yes29 No3 Missing12

37. Results  Variable: PHR’ characteristics - Illnesses VariableAnswersFrequency (n) More useful in certain illnesses Spyna bifida1 Cardiac problems 1 Surgery 2 Cancer 2 Mental problem 3 Dental problems 3 STDs 3 Chronich disease 7 Generic 22

38. Results  Variable: Patients’ description VariableAnswersFrequency (n) Patient’s nationality Developed country34 Country in development2 Missing8 Patient’s age Child4 Adult17 Elderly4 Missing19 Contact with the PHR Employer1 Mail Box3 Phone Call5 Internet7 Clinic10 Missing18

39. Results  Variable: Patients’ health status VariableAnswersFrequency (n) Decreased visits to physician? Yes6 No7 Missing31 Decreased visits to emergengy? Yes5 No3 Missing36 Decreased hospitalization? Yes3 No4 Missing37

40. Results  Variable: Patients’ health status VariableAnswersFrequency (n) Decreased mortality rate? Yes1 No3 Missing40 Health Status Improvement12 No alteration3 Missing29

41. Results  Variable: Patients’ opinion VariableAnswersFrequency (n) Security Low5 Medium5 High9 Missing25 Utility Useful25 Useless2 Missing17 Easy access Yes25 No3 Missing16

42. Results  Variable: Patients’ response VariableAnswersFrequency (n) Did patients manage their own health? Yes27 No6 Missing11 More accurate use of medication Yes12 No4 Missing28

43. Results  Variable: Costs VariableAnswersFrequency (n) Reduction of costs? Yes7 No4 Missing33

44. Results  Variable: Communication VariableAnswersFrequency (n) Doctor-patient relationship improved? Yes16 No5 Missing24

45. Results Number of articles that quote each type of PHR in developed countries and countries in development. The results are statistically significant (p<0,05). N=29.

46. Results Association between the patients that start managing their health or not and the changes on health status. The results are statistically significant (p<0,05). N=13.

47. Discussion  The results obtained allow us to conclude that PHRs, in fact, improve the health of their users. In spite of the low number of statistically significant results, those which are so (as well as the tendencies represented by the other values) confirm this belief,, leading us to affirm that further research on this theme would be important.

48.  We observed that this is a topic increasingly discussed in the scientific community, as the number of papers increased exponentially since 2005 (32 of 44 articles). This is probably due to the increasing concern with the power of technologies to easy our tasks or to improve our quality of life. Discussion Study characteristics

49.  Internet PHRs are the most used, followed by paper-based and USB-pen ones. The persistency of paper-based PHRs might be caused by problems of Internet security and accessibility.  Internet PHRs are the most used, especially on developed countries. Discussion PHR’s characteristics

50.  We also found a majority of PHRs free of charge, perhaps because this technology is not yet well known, thus needing of some good publicity to gather users.  We had twice as many examples of PHRs supported by medical entities than those without support, which shows the importance given to this technology. Discussion PHR’s characteristics

51.  There are many PHRs used in the treatment of chronic diseases (Spyna bifida, Cardiac problems, Surgery, Cancer, Mental problem, Dental problems, STDs, Chronich disease, Generic), maybe due to the importance of the recording of the facts related to the health of these patients, who have by nature a vast clinical history. Discussion PHR’s characteristics

52.  PHRs are commonly used in emergency situations, thus helping the health professionals in situations demanding the access to information about the patient in very scarce time. This process reduces doubt and potentially fatal mistakes. Discussion PHR’s characteristics

53.  Most people came into contact with PHRs by new means of communication or by the advice of a health professional.  34 out of 44 articles referred to PHRs of developed countries. Discussion Patients’ description

54.  The majority of people who use PHRs are adults, maybe because they are more instructed – useful to access and use PHRs, especially Internet ones – and more worried about their health. Discussion Patients’ description

55.  We were unable to draw conclusions on cost reduction, decreasing visits to physician and to the emergency room, hospitalizations or even mortality rate.  This is due to the type of studies, theirs duration, or random errors, which were out of our control. Discussion Patients’ Health Status

56.  We can consider, with statistically significant results, that there was an improvement on the health of those who started managing actively their own health.  There is also a larger proportion of people who were empowered to deal with their health than those who didn’t (27 out of 44). Discussion Patients’ Health Status

57.  PHRs improved the use of medication and the same happened for the patient/doctor relation (16 out of 44). Discussion Patients’ Health Status

58.  Most of the users found PHRs useful and of easy access (25 out of 44, on both aspects), which are points in favor of this new technology.  As for the security, we haven’t had any conclusion, because the opinions were very dispersed. Discussion Patients’ opinion

59.  Scattered information in various articles, which lead to a great necessity of search, selection and processing of data.  Lack of other articles similar to ours was also a negative side, as we were dependent on the extent of previous research made in the area. Discussion Limitations

60. Further research on the subject would be relevant, as PHRs seem to be a growing technology that could resolve some issues in the world of health care.

61. Acknowlegements  Ricardo João Cruz Correia, Assistant Professor of the Biostatistics and Medical Informatics Department, Faculty of Medicine - University of Porto  Altamiro Manuel Rodrigues da Costa Pereira, Cathedratic Professor of the Biostatistics and Medical Informatics Department, Faculty of Medicine - University of Porto