Personal Health Records:
Is there an impact on patient’s health?
Introdução à MedicinaTurma 112009/2010
Key-wordsPersonal Health Records; Personal Child Health Records; PHR; Health Impact.
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.
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.
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.
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
Personal
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]
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.
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.
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
Research question"Does the use of PHRs improve the health of
their users?"
AimComprehend 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
MethodsStudy participants
Original articles that evaluate the impact of PHRs
Study Design: Systematic Review
Broad research
Selection
Processing data
Methods
Methods
Data collection methods
No hand search of references was performed.
698 articles(on 4th of March)
Scopus
PubmedISI
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]
Data Base Criteria Articles 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.
LimitsMethods
• Evaluated the benefits of PHRs in health care
• Evaluated PHRs’ effect in certain diseases or populations
• Evaluated PHRs’ acceptance among determined population
• Reported PHRs as a tool for the physician• Evaluated PHRs’ value as a bridge
between the patient and the physician
Inclusion Criteria
Methods
• Dated before 1990• Without an available abstract or
full text• About electronic systems of
health care providers• About electronic health records• Not written in English or
Portuguese
Exclusion Criteria
Methods
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
Methods
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.
Methods
Therefore, of a total of 362 articles, the revisers agreed in 268, leading 94 articles to a third scrutiny.
K0,48
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
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
MethodsImpact variablesVariables Question
Study Type of studyStudy 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?
Variables Question
Patients’ description NationalityAgeHow 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
MethodsStatistic 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.
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.
Results Variable: Study characteristics
Variable Answers Frequency (n)
Type of study Research support 1
Case control 1
Comparative 2
Conference 2
Original article 2
Cross-sectional 2
Preliminary study 2
Cohort 5
Clinical trial 7
Survey 11
Missing 9
Year of
publication
<2000 4
2000-2004 8
2005 32
Results
Variable: PHR’ characteristics – Data and PHR access
Variable AnswersFrequency
(n)
Type of system Pen 2
Paper-based 7
Internet 25
Missing 10
Free of
charge?
Yes 25
No 4
Missing 15
PHR’s supplier Public 19
Private 10
Missing 15
Results
Variable: PHR’ characteristics – PHR’s tools
Variable AnswersFrequency
(n)
Analytical tools and decision support
routines
None 4
Allergies 4
Insurance
information5
Laboratory tests 5
Patient description 5
Medication 9
Missing 12
Results
Variable: PHR’ characteristics – Emergency access
Variable AnswersFrequency
(n)
Emergency
availability
Yes 11
No 5
Missing 28
Results
Variable: PHR’ characteristics – Data re-use
Variable AnswersFrequency
(n)
Use for research Yes 16
No 6
Missing 22
Results
Variable: PHR’ characteristics – Health entities
Variable AnswersFrequency
(n)
Encouragement from health
entities
Yes 29
No 3
Missing 12
Results
Variable: PHR’ characteristics - Illnesses
Variable AnswersFrequency
(n)
More useful in certain
illnesses
Spyna bifida 1
Cardiac problems 1
Surgery 2
Cancer 2
Mental problem 3
Dental problems 3
STDs 3
Chronich disease 7
Generic 22
Results Variable: Patients’ description
Variable AnswersFrequency
(n)
Patient’s nationality Developed country 34
Country in development 2
Missing 8
Patient’s age Child 4
Adult 17
Elderly 4
Missing 19
Contact with the
PHR
Employer 1
Mail Box 3
Phone Call 5
Internet 7
Clinic 10
Missing 18
Results
Variable: Patients’ health status
Variable Answers Frequency (n)
Decreased visits to
physician?
Yes 6
No 7
Missing 31
Decreased visits to
emergengy?
Yes 5
No 3
Missing 36
Decreased hospitalization? Yes 3
No 4
Missing 37
Results
Variable: Patients’ health status
Variable Answers Frequency (n)
Decreased mortality rate? Yes 1
No 3
Missing 40
Health Status Improvement 12
No alteration 3
Missing 29
Results
Variable: Patients’ opinion
Variable AnswersFrequency
(n)
Security Low 5
Medium 5
High 9
Missing 25
Utility Useful 25
Useless 2
Missing 17
Easy access Yes 25
No 3
Missing 16
Results
Variable: Patients’ response
Variable Answers Frequency (n)
Did patients manage their own
health?
Yes 27
No 6
Missing 11
More accurate use of medication Yes 12
No 4
Missing 28
Results
Variable: Costs
Variable Answers Frequency (n)
Reduction of
costs?
Yes 7
No 4
Missing 33
Results
Variable: Communication
Variable Answers Frequency (n)
Doctor-patient relationship
improved?
Yes 16
No 5
Missing 24
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.
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.
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.
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
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
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
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
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
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
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
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
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
PHRs improved the use of medication and the same happened for the patient/doctor relation (16 out of 44).
Discussion
Patients’ Health Status
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
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
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.
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