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.

JustificationPHRs 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

Pubmed

ISI

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

papersPubmed 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 durationYear of publicationNumber of participants

PHR’s characteristics

Data and PHR Access Type of systemFree 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 QuestionPatients’ description Nationality

AgeHow 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 SafetyPHR’s UtilityEasy 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.

ResultsWe 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 1Comparative 2

Conference 2Original article 2Cross-sectional 2Preliminary study 2Cohort 5Clinical trial 7Survey 11Missing 9

Year of publication

<2000 42000-2004 8 2005 32

Results Variable: PHR’ characteristics – Data and PHR

accessVariable Answers

Frequency (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 information

5

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.

DiscussionThe 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