Patient experience with family history tool: analysis of patients' experience sharing their family health history through patient-computer dialogue in a patient portal.

OBJECTIVE: The collection and use of a family health history are important for assessing the patient's risk of disease, but history taking is often impeded by practical barriers in the office. Provision for patient-computer dialogue, linked with the electronic health record, may enable patients to contribute their history while bypassing these barriers. We sought to assess the patient experience using such a tool. MATERIALS AND METHODS: We linked the family history module of a computer-based medical history to the patient portal of a large academic health system. The interview consisted of 39 primary questions with a predetermined high test-retest reliability. Patients' results were structured and summarized, and available within their electronic health record. Patients optionally completed a survey about their experience. We inductively analyzed free-text responses collected between 2014 and 2016. RESULTS: Among 97 781 patient portal users, 9562 patients accessed and 4223 patients completed the family medical history interview. Of these patients, 1451 completed our survey. Main themes that were identified included (1) patient empowerment, (2) anticipated value, (3) validity concerns, (4) privacy concerns, and (5) reflections on patient-computer dialogue. Patients also provided suggestions for the improvement of future family history tools. DISCUSSION: Patients providing their family health information is an example of collaborative electronic work with clinicians and was seen as valuable by those who participated. Concerns related to contextual information and uncertainty need to be addressed. CONCLUSIONS: Patient-computer dialogue to collect family medical history empowered patients and added perceived value and efficiency to the patient experience of care.

Rethinking the outpatient medication list: increasing patient activation and education while architecting for centralization and improved medication reconciliation.

Objective: Identify barriers impacting the time consuming and error fraught process of medication reconciliation. Design and implement an electronic medication management system where patient and trusted healthcare proxies can participate in establishing and maintaining an inclusive and up-to-date list of medications. Methods: A patient-facing electronic medication manager was deployed within an existing research project focused on elder care management funded by the AHRQ, InfoSAGE, allowing patients and patients' proxies the ability to build and maintain an accurate and up-to-date medication list. Free and open-source tools available from the U.S. government were used to embed the tenets of centralization, interoperability, data federation, and patient activation into the design. Results: Using patient-centered design and free, open-source tools, we implemented a web and mobile enabled patient-facing medication manager for complex medication management. Conclusions: Patient and caregiver participation are essential to improve medication safety. Our medication manager is an early step towards a patient-facing medication manager that has been designed with data federation and interoperability in mind.

InfoSAGE: Supporting Elders and Families through Online Family Networks.

With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families. The InfoSAGE system has 257 registered users; 52 of these opted into an in-depth longitudinal study. A descriptive analysis of these early participants, the online family networks, and barriers to participation that were encountered are presented.

InfoSAGE: Use of Online Technologies for Communication and Elder Care.

Aging creates new information and communication needs for families who are helping to coordinate care for frail parents. To identify how information and communication needs evolve with the aging process, we created a living laboratory of families, supported by an online private social network with tools for care coordination. Site registrants are invite to participate in a more in-depth survey-based longitudinal study. In year one, we assessed the feasibility of an online living laboratory. During this first year, 155 individuals registered on InfoSAGE, and 26% opted into the more in-depth longitudinal study. The survey response rate for those in the study was 61%. We present here a descriptive analysis of our early participants and networks, as well as barriers to participation that the study team encountered.

Designing online health services for patients.

Patients are increasingly interacting with their healthcare system through online health services, such as patient portals and telehealth programs. Recently, Shabrabani and Mizrachi provided data outlining factors that are most important for users or potential users of these online services. The authors conclude convincingly that while online health services have great potential to be helpful to their users, they could be better designed. As patients and their families play an increasingly active role in their health care, online health services should be made easier for them to use and better suited to their health-related needs. Further, the online services should be more welcoming to people of all literacy levels and from all socioeconomic backgrounds.

Improving health care proxy documentation using a web-based interview through a patient portal.

OBJECTIVE: Health care proxy (HCP) documentation is suboptimal. To improve rates of proxy selection and documentation, we sought to develop and evaluate a web-based interview to guide patients in their selection, and to capture their choices in their electronic health record (EHR). METHODS: We developed and implemented a HCP interview within the patient portal of a large academic health system. We analyzed the experience, together with demographic and clinical factors, of the first 200 patients who used the portal to complete the interview. We invited users to comment about their experience and analyzed their comments using established qualitative methods. RESULTS: From January 20, 2015 to March 13, 2015, 139 of the 200 patients who completed the interview submitted their HCP information for their clinician to review in the EHR. These patients had a median age of 57 years (Inter Quartile Range (IQR) 45-67) and most were healthy. The 99 patients who did not previously have HCP information in their EHR were more likely to complete and then submit their information than the 101 patients who previously had a proxy in their health record (odds ratio 2.4, P = .005). Qualitative analysis identified several ways in which the portal-based interview reminded, encouraged, and facilitated patients to complete their HCP. CONCLUSIONS: Patients found our online interview convenient and helpful in facilitating selection and documentation of an HCP. Our study demonstrates that a web-based interview to collect and share a patient's HCP information is both feasible and useful.

Information Sharing Preferences of Older Patients and Their Families.

IMPORTANCE: Elderly patients often share control of their personal health information and decision making with family and friends when needed. Patient portals can help with information sharing, but concerns about privacy and autonomy of elderly patients remain. Health systems that implement patient portals would benefit from guidance about how best to implement access to portals for caregivers of elderly patients. OBJECTIVE: To identify how patients older than 75 years (hereinafter, elders) and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals. DESIGN, SETTING, AND PARTICIPANTS: A qualitative study was conducted from October 20, 2013, to February 16, 2014, inviting participants older than 75 years (n = 30) and participants who assist a family member older than 75 years (n = 23) to 1 of 10 discussion groups. Participants were drawn from the Information Sharing Across Generations (InfoSAGE) Living Laboratory, an ongoing study of information needs of elders and families based within an academically affiliated network of senior housing in metropolitan Boston, Massachusetts. Groups were separated into elders and caregivers to allow for more detailed discussion. A professional moderator led groups using a discussion guide. Group discussions were audiotaped, transcribed, and analyzed inductively using immersion/crystallization methods for central themes. MAIN OUTCOMES AND MEASURES: Central themes regarding sharing of health information between elderly patients and family caregivers. RESULTS: Seven lessons emerged from 2 main themes. First, sharing information has consequences: (1) elders and caregivers have different perspectives on what is seen as the "burden" of information, (2) access to medical information by families can have unintended consequences, and (3) elders do not want to feel "spied on" by family. Second, control of information sharing is dynamic: (4) elders wish to retain control of decision making as long as possible, (5) transfer of control occurs gradually depending on elders' health and functional status, (6) control of information sharing and decision making should be fluid to maximize elders' autonomy, and (7) no "one-size-fits-all" approach can satisfy individuals' different preferences. CONCLUSIONS AND RELEVANCE: Information sharing and control are complex issues even under the most well-meaning circumstances. While elders may delegate control and share information with family, they want to retain granular control of their information. When using patient portals, simple proxy access may not adequately address the needs and concerns of aging patients.

Evaluation of computer-based medical histories taken by patients at home.

The authors developed a computer-based general medical history to be taken by patients in their homes over the internet before their first visit with their primary care doctor, and asked six doctors and their participating patients to assess this history and its effect on their subsequent visit. Forty patients began the history; 32 completed the history and post-history assessment questionnaire and were for the most part positive in their assessment; and 23 continued on to complete their post-visit assessment questionnaire and were for the most part positive about the helpfulness of the history and its summary at the time of their visit with the doctor. The doctors in turn strongly favored the immediate, routine use of two modules of the history--the family and social histories--for all their new patients. The doctors suggested further that the summaries of the other modules of the history be revised and shortened to make it easier for them to focus on clinical issues in the order of their preference.

Test-retest reliability in a computer-based medical history.

The authors developed a computer-based medical history for patients to take in their homes via the internet. The history consists of 232 'primary' questions asked of all patients, together with more than 6000 questions, explanations, and suggestions that are available for presentation as determined by a patient's responses. The purpose of this research was to measure the test-retest reliability of the 215 primary questions that have preformatted, mutually exclusive responses of 'Yes,' 'No,' 'Uncertain (Don't know, Maybe),' 'Don't understand,' and 'I'd rather not answer.' From randomly selected patients of doctors affiliated with Beth Israel Deaconess Medical Center in Boston, 48 patients took the history twice with intervals between sessions ranging from 1 to 35 days (mean 7 days; median 5 days). High levels of test-retest reliability were found for most of the questions, but as a result of this study the authors revised five questions. They recommend that structured medical history questions that will be asked of many patients be measured for test-retest reliability before they are put into widespread clinical practice.

Reflections on electronic medical records: when doctors will use them and when they will not.

PURPOSE: Our purpose is to counter the common wisdom that doctors are refractory to change and therefore responsible for the limited use of electronic medical records. METHODS: We draw on experience with electronic medical records in two Harvard Medical School teaching hospitals dating back to the early 1980s. RESULTS: Doctors quickly become ardent users of electronic medical records if the software is sufficiently helpful in the care of their patients. CONCLUSIONS: The key to enthusiastic acceptance of electronic medical records is computing that is easy to use and helpful to doctors, nurses, and other clinicians in the care of their patients.