1. Personal Health Records: a systematic review Authors: Maria João Xará, Nivalda Pereira, Sandra Fontes, Anabela Maio, Maria João Pinto, Cristina Gomes, Hugo Cunha Tiago Adrego, Paulo Pancrácio Supervisor: Dr Ricardo Correia Class 21 Biostatistics and Medical Informatics Department

2. Structure Introduction –Objectives Methods Results Discussion Conclusions

3. Introduction Why PHR’s now? There has been a tremendous progress in medicine as well as in informatics during the last decades. Haus, Reinhold; 2006 Recently there has been a remarkable upsurge in activity surrounding the adoption of personal health record (PHR) systems for patients and consumers. Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ

4. What is a PHR? PHR is a collection of important information about individual’s health or the health of someone he is caring for (such as a parent or a child) that he actively maintains and update. American Health Information Management Association, 2006 PHR is a medical historial made by the patient and that is not controlled by the health professional. PHR's systems are more than just static repositories for patient data.

5. What kind of information can a PHR contain? Personal identification; List and dates of significant illness and surgeries; Current medications and dosages; Immunizations and their dates; Allergies; Organ donor authorization; Opinions of specialists; Important test results; Eye and dental records; Any information that the user think is important for his health. American Health Information Management Association, 2006

6. Why using PHR? Potential Advantages Lower chronic disease management costs Lower medication costs Lower wellness program costs Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ.; 2006 To improve communication between the user and his providers To reduce or eliminate duplicate procedures or processes Lawrence Gostin, JD;1997

7. Objectives To evaluate the impact of PHR's’ utilization in the users’ health care.

8. Methods

11. Methods (participants)

12. Analysis’ strategy Groups of reviewers with 2 elements: 36 groups ; Groups analysed between 6 and 8 abstracts; Results were expressed in Microsoft Excel which includes: –Title, author, year and origin of the article; –Reviewer group; –Inclusion or exclusion; –Criteria not satisfied for exclusion.

13. Analysis Important information: Characteristics of the individuals Patient responsibility for the prevention or intervention process Implemented system Users’ perception Health status of the user using the PHR Hospital services

14. Results Systematic search: n = 364 Systematic search (after eliminating the repeated articles): n = 229 Articles included: n = 20 Percentage Inclusion: 8,7 % Exclusion: 69 % No abstract: 22,3%

15. Agreement Number of articles agreed / Total of articles read Mean (%): 90,2 %

16. Exclusion Legend: 1 – Does not respect both cirteria 2 – Does not present PHR’s evaluation of impact 3 – Does not present PHR’s definition

17. Included articles TitleYear Type of the Study Study Duration System Objective Type of system Participants nAge South Australian personal health record: Determinants of use (209) 1998Experimental randomized ___ Store data related to child development Paper (Blue Book) 315 (GP’s) 500 (parents) Child: > 10 years Personal health records: an evaluation. (152) 1987Cohort8-11 months Store data related to child development Paper167Child: 0-5 years Personal health information management system and its application in referral management. (140) 2004Experimental7 monthsWeb61Mean: 47,50 Implementation of personal health records by case managers in a VAMC general medicine clinic. (94) 2004Cohort: 2 groups with and without PHR’s 14 monthsThe impact of utilization of personal health records on patient access to vital health information Paper (Checkbook) 150 patients and 8 nurses Mean: Cohort 1(received): 65 (25-83) Cohort 2 (didn’t) 66,5 (28-84):

18. Article Patients OpinionProviders OpinionPatient – Provider Relationship UtilitySecurity South Australian personal health record: Determinants of use (209) 73% think its useful to child with less than a 6 months 21% think its useful to all ages 42% - useful to children with more than 6 months ____ 80% believed the Blue Book to be acceptable and useful to their clinical practice. Young providers were more likely to find the Blue Book acceptable _____ Personal health records: an evaluation. (152) Yes (75% PHR’s had nine or more entries) 91% of records had progress notes made by nurses ____ Differences in the acceptance between public and private sectors. _____ Personal health information management system and its application in referral management. (140) Yes can be coupled with home biosensor instruments for home monitoring of chronic diseases ____ Improve communication Implementation of personal health records by case managers in a VAMC general medicine clinic. (94) 45% used PHR 27% updated Once they use checkbook, there aren’t privacy problems. ____ Improve communication

19. Web’s PHR ArticleType of StudyMain Conclusion 154 - Personal health records: evaluation of functionality and utility. (2004) Revision (sites) Currently available PHR's demonstrate limited functionality. 124 - Patient entry of information: evaluation of user interfaces. (2004) Experimental Different types of data entry methods employed by Personal health records may have an impact on the accuracy of patient-entered medical information. Approaches that rely on guided entry of data elements abstracted from primary source documents may promote more accurate entry of information. 110 - Making public health data available to community-level decision makers-goals, issues, and a case report. (2001) ? For the near future, the plan for MICA centers on adding functionality.

20. Editable EHR ArticleType of the Article Main Conclusion 128 - Patient participation in EHR benefits. (2003) Opinion Article Patient participation in EHR creation can significantly broaden the range of healthcare information in the record and, ultimately, improve clinical decision support. 126 - Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging. (2004) Online Survey Patients' attitudes about the use of Web messaging and online access to their EHR were mostly positive. 220 - Use of a patient- accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. (2004) Original Research Paper (Questionnaires to users) These findings suggest a number of potential benefits and few if any adverse consequences to providing this access. 218 - Towards personal health record: current situation, obstacles and trends in implementation of electronic healthcare record in Europe. (1998) Opinion Article The electronic healthcare record is a necessary tool supporting the person (citizen) centred shared care.

21. Discussion Implemented systems show that PHR’s improve communication between patient and healthcare provider; PHR’s still have limited functionality; PHR’s enable patients to take a more active and effective role in their health care; Since 1987, there hasn’t been any significant breakthrough in the functionality of PHR’s; There are few scientific articles with an objective evaluation of PHR’s; Most of the articles regarding the subject are opinion articles; More experimental evidence is required in order to assess the full extent of potential benefits mentioned in several opinion papers.

22. Acknowledgements Professor Doutor Altamiro Manuel Rodrigues da Costa Pereira Doutor Ricardo João Cruz Correia