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You Are Here: AHRQ Home > Clinical Information > EPC Evidence Reports > Topics In Progress > Patient-Centered Care & Health IT

Patient-Centered Care & Health IT

Full Title: Enabling Patient-Centered Care through Health Information Technology (Health IT)

Evidence-based Practice Center Review Protocol

Expected Release Date: late 2010

Contents

Background and Objectives for the Systematic Review
Key Questions
Analytic Framework
Proposed Literature Search and Review
References
Definition of Terms
Summary of Protocol Amendments
Appendix 1
Appendix 2

Background and Objectives for the Systematic Review

The Agency for Healthcare Research and Quality (AHRQ) requested an evidence report on the "Enabling Patient-centered Care through Health IT." This report focuses on the development of a comprehensive understanding of the impact of health information technology (IT) applications developed and implemented to enhance the provision of patient-centered care. AHRQ is requesting a report that reviews the literature on the evidence of the impact of currently developed health IT applications on patient-centered care, identifies the gaps in the literature and recommends future research endeavors in order to better assess these IT applications' impact on patient-centered care.

Patient-centered care is defined by the Institute of Medicine (IOM) as "care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions."1 It was recognized by the IOM as one of the six major domains of quality. While the potential of health IT in enabling patient-centered care has been widely recognized, evidence-based comprehensive analysis of its impact on quality of care has not been conducted. In addition, barriers and facilitators of health IT-enabled patient-centered care (PCC) have not been reviewed systematically. We will review the evidence regarding the proposed questions, focusing on the effectiveness of health IT applications enabling patient-centered care in improving care processes, clinical outcomes, and intermediate outcomes such as patient/provider satisfaction, health knowledge and behaviors, cost and physiologic measures. Our report will address the value of health IT-enabled PCC, and research gaps with particular attention to its role in improving shared decision making, patient-clinician communication and access to medical information. The perspective of clinicians, developers, consumers and their families will be addressed in our review of the barriers and facilitators of health IT-enabled PCC implementation.

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Key Questions

  1. What evidence exists that health IT applications which enable clinicians to provide patient-centered care or patients to elicit patient-centered care are effective in improving:
    1. Clinical outcomes for patients (including quality of life)?
    2. Health care process outcomes (e.g. receiving appropriate treatment)?
    3. Intermediate outcomes such as patients' improved health knowledge, health behaviors and physiologic measures, patient satisfaction, and reduced costs?
    4. Responsiveness to the needs and preferences of individual patients?
    5. Improving shared decision-making between patients, their families, and providers, clinician communication, or providing patients and clinicians access to medical information?
    • How does the impact on improving clinical, health care process, intermediate, or responsiveness outcomes vary by type of health IT application?
  2. What are barriers, drivers or facilitators that clinicians, developers, and their families or caregivers encounter that may impact implementation and use of health IT applications to enable patient-centered care?
    • How do these barriers, drivers or facilitators vary by type of health IT application?
  3. What knowledge or evidence deficits exist regarding needed information to support estimates of cost, benefit, impact, sustainability, and net value with regard to enabling patient-centered care through health IT? Discuss gaps in research, including specific areas that should be addressed and suggest possible public and private organizational types to perform the research and/or analysis.
  4. What critical information regarding the impact of health IT applications implemented to enable patient-centered care is needed in order to give consumers, their families, clinicians, and developers a clear understanding of the value proposition particular to them?

    • Population(s):

      The target population will include health care providers utilizing health IT to deliver patient-centered care. We will impose no sex, age, or geographic limitations.
    • Interventions:

      Health IT that enables patient-centered care includes computer-based and telecommunication information systems designed to assist clinicians in providing medical care that is respectful of and responsive to individual patient preferences, needs and values.

      The intervention must be designed to interact directly with clinicians, who are assisted by the patient-centered health information system in delivering care which is tailored to patient needs and preferences.

      For the initial consideration, we will include any health information system assisting clinicians in addressing at least one component of patient-centered care from the set of components defined by a conceptual model of patient-centered care. We may decide to focus primarily on health IT that addresses multiple components of PCC.

    • Comparators:
      We will include randomized controlled trials on health IT implemented to enable patient-centered care (Key Question 1). If no RCTs are identified by our searches, we will consider well-designed interrupted time series analyses (ITS) or quasi-experimental study designs. In these studies, the comparators may be usual care or any other intervention.

      We will accept observational studies such as surveys, where the main purpose of the study is closely aligned with Key Question 2 being addressed in our review.
    • Outcomes for each question:

      Below is a general list of outcomes that the EPC team will be looking at for Key Questions 1 and 2. A more complete list of outcomes of interest will be submitted after the conceptual framework is completed and comments are received from the Technical Expert Panel (TEP):

      • Clinical outcomes (e.g., mortality, morbidity, and quality of life).
      • Health care process outcomes (e.g., receiving appropriate treatment).
      • Intermediate outcomes (e.g., patients improved health knowledge, changes in health behavior, patient satisfaction with care, cost reduction).
      • Responsiveness to patient needs and preferences of individual patients (e.g., patient-clinician communication, respect for patient values, publicly available information, whole person orientation).
      • Improved shared decisionmaking (e.g., routine patient feedback, patient engagement in care, information sharing).
    • Timing:
      At the point of care and at any follow-up period.
    • Settings:
      Studies may be conducted in any clinical setting (e.g., hospital or outpatient facility) for the intervention, in any country.

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Analytic Framework

An analytic framework to illustrate the population, interventions, outcomes, and adverse effects has been developed. We based this analytic framework on Balint, 1969,2 and it includes elements from the following key publications3-6: Gerteis et al., 1993; Stewart et al., 1995; Davis et al 2004; Economic and Social Research Institute 2006; The Joint Principles of the Patient-Centered Medical Home, 2007, as well. This framework is used to guide the literature search and synthesis.

Select for the analytic framework (60 KB).

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Proposed Literature Search and Review

A. Criteria for Inclusion/Exclusion of Studies in the Review

We will only include RCTs on the use of health IT to enable patient-centered care by clinicians for Key Question 1. Well designed interrupted time-series or quasi-experimental studies will be included if no RCTs are available. Studies addressing Key Question 2 can be RCTs, interrupted time series, quasi-experimental or observational.

We are interested in studies evaluating interventions designed to interact directly with clinicians, and initially will include any health IT system designed to assist clinicians in addressing at least one component of PCC. These components will be defined in the conceptual framework which is currently under development.

Currently we do not plan on restricting study inclusion by population size, but will restrict our inclusion by publication date primarily because we believe that health IT has only recently begun to take hold in the area of patient-centered care.

We will include only studies written in English, but will track the number of articles that apply to our key questions that are published in other languages.

If, through our search of published literature, we notice a dearth of information on this topic we will consider searching the grey literature.

B. Searching for the Evidence: Literature Search Strategies for Identification of Relevant Studies to Answer the Key Questions

We conducted several searches to estimate the volume of literature to be reviewed. To estimate the popular literature, we searched the Google Scholar engine using the terms "patient-centered" and "health information technology." These searches found 30,000 and 2,740,000 citations respectively. However, search for the combination of these two terms using Advanced Scholar search engine resulted in 670 citations. To estimate the peer reviewed literature (Appendix 1) we first searched the Medical literature (PubMed®) using the terms Patient-Centered Care and information science as MeSH headings combined with related words that appear in the title and or abstracts of the articles. This search strategy returned 8498 titles. PubMed search using the MeSH headings "patient-centered care" and "Information systems" resulted in 5192 and 105,232 citations respectively, whereas combination of these two headings in the advanced PubMed search resulted in only 237 citations. The Nursing (CINAHL) literature was searched using the same initial mesh headings as used in the MEDLINE® search and nursing terms including "access to care," "patient engagement," "clinical information systems," "care coordination," "communication" "decision support." This strategy returned 1157 titles.

A search was also conducted using the Cochrane databases. Terms used in the MEDLINE® search were used to build this strategy (Appendix 1) and it returned 2920 titles. It is clear, using the most obvious of search terms (Appendix 1), that a large number of articles will be captured in these 2 databases alone. To ensure an adequate search, we next conducted a series of PubMed and Google searches using combinations of:

  • Patient-centered oriented terms.
  • Health and outcomes related terms.
  • Technology related terms.

These searches helped us to identify several peer-reviewed articles related to the use of health IT to enable patient-centered care, a Cochrane review on patient-centered decision aids, and a number of white papers and programmatic publications posted on the web by government and non-profit agencies regarding patient-centered care (Appendix 2). While none of these publications fully address the goals of this review, we intend to account for their findings in our work. We also intend to consider for our review the relevant articles from the proceedings of the American Medical Informatics Association 2008 Symposium which hosted several panels devoted to health IT-enabled patient-centered care. Based on past experience we understand that the number of articles captured in the final search strategies may return a higher yield. Collectively our results suggest that although the descriptive literature in the field of patient-centered care is voluminous, the number of evaluative publications devoted to health IT applications supporting patient-centered care is well suited for a rigorous review.

C. Data Abstraction and Data Management

The JHU EPC currently uses TrialStat's Systematic Review Software (SRS) package to manage the review process. It is our intention to continue using the SRS system through the end of the current contract.

The SRS system manages all levels of the review process. All applicable titles identified by the search strategies are uploaded to the system and managed in the following manner:

  1. Title inclusion/exclusion: All titles will be reviewed by 2 reviewers to determine eligibility. Two reviewers must agree on excluding an article for it to be taken out of the set of articles eligible for abstract review. If a title appears to be "potentially eligible" for further review it is progressed to the net inclusion/exclusion level; only 1 reviewer needs to identify an article as potentially eligible for it to move to abstract review level. If the first reviewer to view a title believes the title is potentially eligible, it will automatically progress to the next level without the need for a second review.
  2. Abstract inclusion/exclusion: This is a more strict level of review. Each abstract is reviewed by 2 reviewers. Both reviewers must agree on whether or not an abstract is eligible for full article inclusion/exclusion. If there is disagreement between the 2 reviewers, the following protocol will be followed:
    1. The reviewer who indicated that the article is eligible for the next level of review will first re-evaluate his/her answer. If he/she agrees it should be excluded, he/she will change the answer in the SRS system and the conflict is resolved.
    2. If the first reviewer (above) believes that the article is eligible for the next level of review he/she will contact the second reviewer with the rationale for inclusion. The second reviewer will re-evaluate his/her answer. If he/she agrees with reviewer 1 he/she will change the answer in the SRS system.
    3. If the first and second reviewers (above) cannot come to an agreement, the abstract will be discussed at a meeting of investigators.
  3. Article inclusion/exclusion: the review protocol for this level is the same as for the abstract inclusion/exclusion level. This level is more detailed in that full articles are reviewed for applicability.
  4. Data abstraction: Articles that are included will be sent to data abstraction. Forms to abstract general data, specific outcomes data, and quality data will be designed to answer the key questions.

D. Assessment of Methodological Quality of Individual Studies

The review of eligible studies to assess quality is very important. Requirements for determining the quality of studies must be determined by both methodologists and clinicians since study design features and relevant clinical measurements are part of study quality. Our approach is to involve both methodologists and clinicians in construction of explicit quality criteria and review of articles to address this limitation of many literature syntheses.

We will assess study quality at the inclusion/exclusion stage; only include the highest quality studies such as randomized controlled trials in studies evaluating impacts on outcomes. Other study designs will need to be included when collecting evidence on barriers, drivers, and facilitators to use of health IT. Randomized controlled trials are not the best study design to test barriers, facilitators, and drivers. At a later stage in the review (after all articles are reviewed and abstracted), we will use explicit methods for assessing study quality. The Jadad7 criteria for assessing study quality of randomized controlled trials will be used in this report for randomized controlled trial only. Quality instruments specifically designed for other study designs will be used along with quality tools previously used by this EPC.

We will assess the quality and appropriateness of all studies that meet our eligibility criteria, following the guidance contained in the EPC Program's methods guide (Chapter 6). We will use a limited number of key criteria that are most appropriate for each study design and that are most important for determining the validity of the studies. We will add criteria, if necessary, to assess unique aspects of the quality of studies on a given topic. Within major categories of study design, individual study quality will be classified as "good", "fair" or "poor" based on the degree to which they adhere to the defined study quality criteria. We will also assess other elements of study design that affect the applicability of the studies. Generally, a "good" study at least partially fulfills all criteria. A "fair" study does not meet at least one important criterion, or generally meets most criteria but has a major flaw. A "poor" study does not meet most criteria, or has a fatal flaw. For randomized controlled trials, important quality criteria include randomization method, allocation concealment, blinding or masking, dropouts and withdrawals, and method of statistical analysis (intention to treat).

We will seek advice from our advisors and technical experts regarding the need for additional study quality assessment criteria. The additional criteria may include, but are not limited to, comparability of groups assembled at baseline, and reliability and validity of outcome measures. Depending on the type of quality assessment completed, the evidence report may include a total quality score for each article (such as the simple validated scoring proposed by Jadad, et al7 for evaluation of clinical trials) and a listing of each study's strengths and weaknesses.

E. Data Synthesis

Based on preliminary literature searches, we believe the studies will be too heterogeneous to support a meta-analysis.

F. Grading the Evidence for Each Key Question

We will assess/rate the strength of the body of evidence according to predetermined criteria. We expect to be able to use a grading scheme developed by the international GRADE Working Group8 At a minimum, we will assess the overall strength of the evidence on each question, taking into consideration: study design, overall internal validity of studies, direction and magnitude of associations, consistency of findings, directness of the evidence, and overall external validity.

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References

1. Institute of Medicine. Corrigan JM, Donaldson MS, Kohn LT, eds. Crossing the quality chasm: A new health system for the 21st century. Washington, D.C.: The National Academies Press 2001.

2. Balint E. The possibilities of patient-centered medicine. J R Coll Gen Pract 1969 May;17(82):269-76

3. M. Stewart, J. Brown, W. Weston, I. McWhinney, C. McWilliam and T. Freeman, Patient-centered medicine: transforming the clinical method, Sage, London (1995).

4. Davis, K., Schoenbaum, S.C., Audet, A.J. A 2020 Vision of Patient-Centered Primary Care. Journal of General Internal Medicine 2005, 20(10):953-57.

5. Silow-Carroll S, Alteras T, Stepnick L. Patient-centered care for underserved populations: Definition and best practices. Washington, DC, USA: Economic and Social Research Institute; January 2006.

6. The Joint Principles of the Patient-Centered Medical Home released in 2007 by the AAP, AAFP, ACP, and AOA.

7. Jadad AR, Moore RA, Carroll D, Jenkinson C, Reynolds DJ, Gavaghan DJ et al. Assessing the quality of reports of randomized clinical trials: is blinding necessary? Control Clin Trials 1996;17:1-12

8. Atkins D, Best D, Briss PA, Eccles M, Falck-Ytter Y, Flottorp S, Guyatt GH, Harbour RT, Haugh MC, Henry D, Hill S, Jaeschke R, Leng G, Liberati A, Magrini N, Mason J, Middleton P, Mrukowicz J, O'Connell D, Oxman AD, Phillips B, Schünemann HJ, Edejer TT, Varonen H, Vist GE, Williams JW Jr, Zaza S; GRADE Working Group. BMJ 2004 Jun 19;328(7454):1490.

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Definition of Terms

Patient-centered care is defined by the Institute of Medicine (IOM) as "care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions."1

Health Information Technology (health IT) is defined as any electronic tool, technology or system that is designed to interact directly with healthcare professional to help support patient health or healthcare needs.

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Summary of Protocol Amendments

In the event of protocol amendments, the date of each amendment will be accompanied by a description of the change and the rationale.

Note: The following protocol elements are standard procedures for all protocols.

Review of Key Questions

For Comparative Effectiveness reviews the key questions were posted for public comment and finalized after review of the comments. For other systematic reviews, key questions submitted by partners are reviewed and refined as needed by the EPC and the Technical Expert Panel (TEP) to assure that the questions are specific and explicit about what information is being reviewed.

Technical Expert Panel (TEP)

A TEP panel is selected to provide broad expertise and perspectives specific to the topic under development. Divergent and conflicted opinions are common and perceived as health scientific discourse that results in a thoughtful, relevant systematic review. Therefore study questions, design and/or methodological approaches do not necessarily represent the views of individual technical and content experts. The TEP provides information to the EPC to identify literature search strategies, review the draft report and recommend approaches to specific issues as requested by the EPC. The TEP does not do analysis of any kind nor contribute to the writing of the report.

Peer Review (Standard Language)

Approximately five experts in the field will be asked to peer review the draft report and provide comments. The peer reviewer may represent stakeholder groups such as professional or advocacy organizations with knowledge of the topic. On some specific reports such as reports requested by the Office of Medical Applications of Research, National Institutes of Health there may be other rules that apply regarding participation in the peer review process. Peer review comments on the preliminary draft of the report are considered by the EPC in preparation of the final draft of the report. The synthesis of the scientific literature presented in the final report does not necessarily represent the views of individual reviewers. The dispositions of the peer review comments are documented and will, for Comparative Effectiveness Reviews (CERs) and Technical Briefs, be published three months after the publication of the Evidence Report.

It is our policy not to release the names of the peer reviewers or TEP panel members until the report is published so that they can maintain their objectivity during the review process. 

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Appendix 1. Preliminary Literature Search Strategy and Results

Database Search Terms Hits
PubMed("Patient-Centered Care"[Mesh] OR (care[tiab] AND "patient centered"[tiab]) OR (patient[tiab] AND (feedback[tiab] OR communications[tiab] OR engagement[tiab] OR empowerment[tiab] OR preferences[tiab]))) AND ("Information Science"[Mesh] OR telemedicine[mh] OR electronic[tiab] OR computer*[tiab] OR records[tiab] OR information[tiab])8498
PubMed"Patient-Centered Care"[Mesh] AND "Information systems" [Mesh]237
CINAHL(MH patient centered care OR TX "access to care" or TX"patient engagement" or TX "care coordination" OR TX communication or TX "decision support" OR TX "care coordination") AND (MH telemedicine OR MH "information science" OR TX "clinical information systems")1157
Cochrane(MeSH descriptor Patient-Centered Care explode all trees OR ((care):ti,ab,kw and "patient centered":ti,ab,kw)) AND (MeSH descriptor Information Science explode all trees OR (electronic):ti,ab,kw OR (telemedicine):ti,ab,kw OR (computer):ti,ab,kw OR (records):ti,ab,kw OR (information):ti,ab,kw)2920

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Appendix 2. List of article that do not apply to this study, but will directly impact the development of search s trategies, and will be used as background material

  1. Demiris G, Afrin LB, Speedie S, Courtney KL, Sondhi M, Vimarlund V, Lovis C, Goossen W, Lynch C. Patient-centered Applications: Use of Information Technology to Promote Disease Management and Wellness. A White Paper by the AMIA Knowledge in Motion Working Group. J Am Med Inform Assoc 2008;15:8-13.
  2. Young AS, Chaney E, Shoai R, Bonner L, Cohen AN, Doebbeling B, Dorr D, Goldstein MK, Kerr E, Nichol P, Perrin R. Information technology to support improved care for chronic illness. J Gen Intern Med 2007;22 Suppl 3:425-30.
  3. O'Connor AM, Stacey D, Rovner D, Holmes-Rovner M, Tetroe J, Llewellyn-Thomas H, Entwistle V, Rostom A, Fiset V, Barry M, Jones J. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2001;(3):CD001431.
  4. Patient-Centered Care 2015: Scenarios, Vision, Goals & Next Steps. Picker Institute, 2004.
  5. Advancing the Practice of Patient- and Family-Centered Care. Institute for Family-Centered Care, Bethesda, MD.
  6. Christina Bethell, PhD. Patient-centered Care Measures for the National Health Care Quality Report. FACCT—The Foundation for Accountability, Portland, OR.
  7. Amy Cunningham, MPH. Synthesis of Definitions of Patient-, Family- and Relatioship-Centered Care. ABIM Foundation, 2008.
  8. Silow-Carroll S, Alteras T, Stepnick L. Patient-Centered Care for Underserved Populations: Definition and Best Practices. Economic and Social Research Institute, 2006, Washington, DC.
  9. Systematic Reviews for Patient-Centered Care. Veterans Health Administration. Technology Assessment Program, 2007.
  10. Conway J, Johnson B, Edgman-Levitan S, Schlucter J, Ford D, Sodomka P, Simmons L. Partnering with Patients and Families to Design a Patient- and Family-Centered Health Care System. A Roadmap for the Future. Institute for Family-Centered Care, 2006, Cambridge, MA.

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Current as of March 2010

Internet Citation:

Enabling Patient-Centered Care through Health IT, Systematic Review Protocol. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/clinic/tp/pcchittp.htm

 
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