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Table 1 Summary of included primary PHR studies that measured benefit from use of PHR by patients

From: Conditions potentially sensitive to a Personal Health Record (PHR) intervention, a systematic review

Author

Conditions

Benefit

Level

# of patients

Study design and duration

Location

PHR type and features

Evaluation methods

Reported Benefits

Wiljer, 2010 [33]

Cancer

No

IV

320 consented, 114 completed study

6 weeks

Canada

Tethered PHR with access to personal health data (labs and diagnostic imaging), access to support groups and a virtual librarian.

State-Trait Anxiety Inventory; Stanford Self-Efficacy for Managing Chronic Disease

No change

Wade-Vuturo, 2013 [34]

Diabetes

Yes

IV

54 patients

Crossectional: PHR use >1 year in 43 patients

USA

Tethered Portal with secure messaging, access to medical records

Patient Self-Report; Chart review to assess glycemic control (A1c).

Improved Patient Satisfaction with Care

Improved Disease Control

More effective face-to-face visits

Better Pt-Provider Communication

Urowitz, 2012 [21]

Diabetes

Yes

IV

17 patients

Crossectional, at least 6 months of access to PHR

Canada

Standalone PHR with ability to record personal health information and see trends, can also look up health information references.

Patient Self-Report

Improved Access to own information

Improved access to pt information by provider

Improved ability to self manage

More Activated Patient

Tenforde, 2011 [35]

Diabetes

Yes

IV

10,746 adult patients

Retrospective audit over 12 months

USA

Tethered PHR with secure messaging and access to health record data, reminders for follow up and health information

Chart review for diabetes indicators (A1c, LDL-C, BP, BMI).

Improved Disease Control

Wald, 2010 [36]

Diabetes

Yes

II

2027 patients

prompt 3 weeks prior to encounter.

USA

Tethered PHR with secure messaging, access to health record data, Journal, and health information.

Patient and Provider Self Report

Improved Patient Satisfaction with Care

Improved access to pt information by provider

More effective face-to-face visits

More Activated Patient

Hess, 2014 [37]

Diabetes (able to extract from paper)

Yes

IV

504 patients

Pre post, one year

USA

Tethered PHR with reminders for preventive care

Patient documentation of care received

Improved Disease Control

Fonda, 2009 [38]

Diabetes

Yes

II

104 patients

RCT, 52 weeks

USA

Tethered PHR with secure messaging, access to personal health data, educational materials.

Problem Areas in Diabetes (PAID) validated survey

Decreased Patient Distress

Lau, 2014 [39]

Diabetes

Yes

III-3

50 users and 107 non-users

6-24 months

Canada

Standalone PHR with health information, journaling, entering health data, secure messaging with providers

Chart review to monitor A1c control

Improved Disease Control

Sarkar, 2014 [40]

Diabetes

Yes

III-3

8705 users with 9055 matched reference group

Observational cohort study, 1 year

USA

Tethered PHR with access to record, secure messaging, renewal requests, and online scheduling.

Measured renewal rates for statins over 1 year based on chart data

Improved Disease Control

Wald, 2009 [41]

Diabetes

Yes

IV

37 patients

2 week follow up, patients were already using the general PHR as part of inclusion.

USA

Tethered PHR with secure messaging, access to personal health data, decision support, ability to annotate their health record, care plan.

Self Report

Improved access to pt information by provider

More effective face-to-face visits

Better Pt-Provider Communication

Grant, 2008 [20]

Diabetes

No

II

244 patients

RCT, use of PHR 52 weeks

USA

Tethered PHR with access to personal health data, decision support, care plans

DM indicators: BP control, A1c, LDL-C’ # of primary care visits.

No change

van Empel, 2011 [42]

Fertility

Yes

IV

369 couples

Cross sectional survey

Netherlands

Tethered PHR with secure messaging, access to personal health data, social support/forums.

Patient Self-Report, Partner Self-Report

Improved Continuity

Improved access to health knowledge

Better Pt-Provider Communication

Boland 2014 [43]

Glaucoma

Yes

II

38 intervention; 32 control

RCT; 3 months

USA

PHR that could record patient information and medications; daily reminders by text/phone to intervention group to take medication

Adherence monitoring with medication smart cap, patient surveys.

Improved medication management

Crouch, 2014 [44]

HIV

Yes

III-3

40 (20 users, 20 non-users)

Cross sectional

USA

Tethered PHR with access to labs, notes, secure communication and medication renewal.

Patient Activation Measure

More Activated Patient

Improved Disease Control

Gordon, 2012 [45]

HIV

No

IV

112 active users

Survey, access up to 114 weeks

USA

Tethered PHR viewer with access to personal health data.

Patient-Self Report

Improved Access to own information

Improved access to health knowledge

More Activated Patient

Kahn, 2010 [46]

HIV

Yes

IV

221 users registered

cross sectional survey, access to PHR up to 21 months

USA

Tethered PHR with access to personal health data, ability to record own health data, access health information

Patient Self-Report

Better Pt-Provider Communication

Improved ability to self manage

More Activated Patient

McInnes, 2013 [47]

HIV

Yes

IV

1871 patients

Cross sectional survey and chart review

USA

Tethered PHR with access to personal health data, request medication renewal, reminders for preventive care, scheduling appointments, secure messaging

Chart review, survey data from Veterans Aging Cohort Study

Improved ability to self manage

Shade, 2014 [48]

HIV

Yes

IV

Unclear at site using PHR

12 month (6 pre and 6 post) study

USA

Standalone PHR with continuity of care patient summaries including HIV results; secure provider communication.

Chart review

Improved ability to self manage

Improved Disease Control

Wagner, 2012 [49]

Hypertension

No

II

453 users

RCT, PHR use up to 39 weeks (4 visits)

USA

Tethered PHR with secure messaging, access to personal health data, track personal health data, access to health information, care plan goal setting.

Patient Self-Report, Chart review for blood pressure

No change

Chiche, 2012 [50]

Idiopathic thrombocytopenic purpura (ITP)

No

III-2

43 patients

26 weeks

France

Standalone PHR with ability to record personal health data

ITP patient assessment questionnaire

No change

Miller, 2011 [51]

Multiple Sclerosis

No

II

204 patients recruited

RCT, 52 weeks

USA

Standalone PHR with ability to record personal health data and receive decision support (through MS Quality of Life Inventory)

Sickness Impact Profile, MS Functional Composite, Control Subscale of the MS Self-Efficacy Scale

No change

Seniors’ General Satisfaction and Physician Quality of Care

Euro-Quality of Life 5

Solomon, 2012 [18]

Asthma, Hypertension, Diabetes

Yes

II

201 patients

12 week

USA

Tethered PHR with secure messaging and targeted health education weekly training modules.

Patient Activation Measure 13 (PAM-13)

Improved ability to self manage

Chart Review

More Activated Patient

Sobko, 2011 [19]

Diabetes, hypertension, lipids

Yes

IV

9504

Cohort study - chart review 6 month pre and 14 months post PHR deployment

USA

Tethered PHR with access to health record, secure communication, decision support, medication renewal

Chart review: medication possession rates; A1c, blood pressure, lipids

Improved ability to self manage

Improved Disease Control