Guidelines and recommendations developed and/or endorsed by the American College of Rheumatology (ACR) are intended to provide guidance for particular patterns of practice and not to dictate the care of a particular patient. The ACR considers adherence to the recommendations within this guideline to be voluntary, with the ultimate determination regarding their application to be made by the physician in light of each patient's individual circumstances. Guidelines and recommendations are intended to promote beneficial or desirable outcomes but cannot guarantee any specific outcome. Guidelines and recommendations developed and endorsed by the ACR are subject to periodic revision as warranted by the evolution of medical knowledge, technology, and practice. ACR recommendations are not intended to dictate payment or insurance decisions. These recommendations cannot adequately convey all uncertainties and nuances of patient care.The American College of Rheumatology is an independent, professional, medical and scientific society that does not guarantee, warrant, or endorse any commercial product or service.

This guideline provides direction for clinicians and patients making treatment decisions. Clinicians and patients should use a shared decision-making process that accounts for patients' values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.

Background Access to medical encounter notes (OpenNotes) is believed to empower patients and improve the quality and safety of care. The impact of such access is not well understood beyond select health care systems and notes from primary care providers. Objectives This article analyzes patients' perceptions about the patient portal experience with access to primary care and specialist's notes and evaluates free-text comments as an improvement opportunity. Materials and Methods Patients at an academic health care system who accessed the patient portal from February 2016 to May 2016 were provided a link to complete a 15-item online survey. Those who had viewed at least one note were asked about patient characteristics, frequency of note access, note usefulness, note understanding, and if any action was taken after accessing the note. Free-text comments were associated with nine questions which were analyzed using qualitative methods. Results A total of 23% (1,487/6,439) of patients who viewed the survey in the portal, participated. Seventy-six percent (1,126/1,487) knew that the notes were available on the portal, and of those, 957 had viewed at least one note to continue the survey. Ninety percent of those were older than 30 years of age, and 90% had some college education. The majority (83%) thought OpenNotes helped them take better care of themselves, without increasing worry (94%) or contacting the physician after reading the note (91%). The qualitative analysis of free-text responses demonstrated multiple positive and negative themes, and they were analyzed for potential improvement opportunities. Conclusion Our survey confirms that patients who choose to access their primary care and specialists' online medical records perceive benefits of OpenNotes. Additionally, the qualitative analysis of comments revealed positive benefits and several potential patient portal improvement opportunities which could inform implementation of OpenNotes at other health systems.

BackgroundEvidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement.Methods/designWe are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness.DiscussionThis study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians.Trial registrationClinicalTrials.gov: NCT02138448Electronic supplementary materialThe online version of this article (doi:10.1186/s13012-014-0181-1) contains supplementary material, which is available to authorized users.