Ines Baudendistel

The patients’ active role in managing a personal electronic health record: a qualitative analysis

PurposeThe complexity of illness and cross-sectoral health care pose challenges for patients with colorectal cancer and their families. Within a patient-centered care paradigm, it is vital to give patients the opportunity to play an active role. Prospective users’ attitudes regarding the patients’ role in the context of a patient-controlled electronic health record (PEPA) were explored.MethodsA qualitative study across regional health care settings and health professions was conducted. Overall, 10 focus groups were performed collecting views of 3 user groups: patients with colorectal cancer (n = 12) and representatives from patient support groups (n = 2), physicians (n = 17), and other health care professionals (HCPs) (n = 16). Data were audio- and videotaped, transcribed verbatim and thematically analyzed using qualitative content analysis.ResultsThe patients’ responsibility as a gatekeeper and access manager was at the center of the focus group discussions, although HCPs addressed aspects that would limit patients taking an active role (e.g., illness related issues). Despite expressed concerns, PEPAs possibility to enhance personal responsibility was seen in all user groups.ConclusionsGiving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.

Collaboration and communication in colorectal cancer care: a qualitative study of the challenges experienced by patients and health care professionals.

Background. Colorectal cancer is becoming a chronic condition. This has significant implications for the delivery of health care and implies the involvement of a range of health care professionals (HCPs) from different settings to ensure the needed quality and continuity of care. Objectives. To explore the challenges that patients and HCPs experience in the course of colorectal cancer care and the perceived consequences caused by these challenges. Methods. Ten semi-structured focus groups were conducted including patients receiving treatment for colorectal cancer, representatives of patient support groups, physicians and other non-physician HCPs from different health care settings. Participants were asked to share their experiences regarding colorectal cancer care. All data were audio- and videotaped, transcribed verbatim and thematically analysed using qualitative content analysis. Results. Patients and HCPs (total N = 47) experienced collaboration and communication as well as exchange of information between HCPs as challenging. Particularly communication and information exchange with GPs appeared to be lacking. The difficulties identified restricted a well-working coordination of care and seemed to cause inappropriate health care. Conclusion. Colorectal cancer care seems to require an effective, well-working collaboration and communication between the different HCPs involved ensuring the best possible care to suit patients’ individual needs. However, the perceived challenges and consequences of our participants seem to restrict the delivery of the needed quality of care. Therefore, it seems crucial (i) to include all HCPs involved, especially the GP, (ii) to support an efficient and standardized exchange of health-related information and (iii) to focus on the patients’ entire pathway of care.

Factors associated with medication information in diabetes care: differences in perceptions between patients and health care professionals

Purpose This qualitative study in patients with type 2 diabetes and health care professionals (HCPs) aimed to investigate which factors they perceive to enhance or impede medication information provision in primary care. Similarities and differences in perspectives were explored. Methods Eight semistructured focus groups were conducted, four with type 2 diabetes patients (n=25) and four with both general practitioners (n=13) and health care assistants (n=10). Sessions were audio and video recorded, transcribed verbatim, and subjected to computer-aided qualitative content analysis. Results Diabetes patients and HCPs broadly highlighted similar factors as enablers for satisfactory medication information delivery. Perceptions substantially differed regarding impeding factors. Both patients and HCPs perceived it to be essential to deliver tailored information, to have a trustful and continuous patient–provider relationship, to regularly reconcile medications, and to provide tools for medication management. However, substantial differences in perceptions related to impeding factors included the causes of inadequate information, the detail required for risk-related information, and barriers to medication reconciliation. Medication self-management was a prevalent topic among patients, whereas HCPs’ focus was on fulfilling therapy and medication management responsibilities. Conclusion The findings suggest a noteworthy gap in perceptions between information provision and patients’ needs regarding medication-related communication. Medication safety and adherence may be improved if HCPs collaborate more closely with diabetes patients in managing their medication, in particular by incorporating the patients’ perspective. Health care systems need to be structured in a way that supports this process.

Understanding Challenges, Strategies, and the Role of Support Networks in Medication Self-management Among Patients With Type 2 Diabetes

Purpose The purpose of this qualitative study was to investigate the challenges and strategies of patients with type 2 diabetes mellitus (T2DM) regarding daily management of their medication regimen focusing on the role of their support networks. Methods A purposeful sample of 25 patients with T2DM was recruited from local self-help groups, general practitioner practices, and a university hospital in southwestern Germany. Four semi-structured focus groups were conducted to identify the challenges patients experienced, the strategies they used, and their collaboration with support networks to assist them in self-managing their medication regimen. Sessions were audio- and video-recorded, fully transcribed, and subjected to computer-aided qualitative content analysis, guided by the Self- and Family Management Framework (SFMF). Results Patients with T2DM experienced numerous challenges affecting medication self-management arising from their personal situation, health status and resources, characteristics of their regimen, and how health care is currently organized. Patients’ self-initiated strategies included activating health care, community, social, and online resources; taking ownership of medication-related needs; and integrating medication-taking into daily life. Patients drew on self-help groups, family, and friends to discuss concerns regarding medication safety and receive experience-based information and advice for navigating within the health care system as well as practical hands-on support with daily medication self-management. Conclusions Understanding the challenges and building on strategies patients with T2DM devised help diabetes educators to better address patients’ needs and priorities and guide patient-centered interventions to support patients’ self-management activities. Community and social support networks operating in patients’ lives need to be engaged in the self-management support.

Complexity of care and strategies of self-management in patients with colorectal cancer

Purpose Given the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity. Methods A qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis. Results The results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) “complexity of disease”, 2) “complexity of care”, and 3) “complexity of treatment-related data”. To deal with these multifaceted situations, patients have established several individual strategies. These strategies are “proactive demanding” (eg, to get support and guidance or a meaningful dialog with the doctor), “proactive behavior” (eg, preparation of visits), and “proactive data management” (eg, in terms of merging treatment-related data and to disseminate these to their health care providers). Conclusion Patients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient’s life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).

Developing a Shared Patient-Centered, Web-Based Medication Platform for Type 2 Diabetes Patients and Their Health Care Providers: Qualitative Study on User Requirements

Background Information technology tools such as shared patient-centered, Web-based medication platforms hold promise to support safe medication use by strengthening patient participation, enhancing patients’ knowledge, helping patients to improve self-management of their medications, and improving communication on medications among patients and health care professionals (HCPs). However, the uptake of such platforms remains a challenge also due to inadequate user involvement in the development process. Employing a user-centered design (UCD) approach is therefore critical to ensure that user’ adoption is optimal. Objective The purpose of this study was to identify what patients with type 2 diabetes mellitus (T2DM) and their HCPs regard necessary requirements in terms of functionalities and usability of a shared patient-centered, Web-based medication platform for patients with T2DM. Methods This qualitative study included focus groups with purposeful samples of patients with T2DM (n=25), general practitioners (n=13), and health care assistants (n=10) recruited from regional health care settings in southwestern Germany. In total, 8 semistructured focus groups were conducted. Sessions were audio- and video-recorded, transcribed verbatim, and subjected to a computer-aided qualitative content analysis. Results Appropriate security and access methods, supported data entry, printing, and sending information electronically, and tracking medication history were perceived as the essential functionalities. Although patients wanted automatic interaction checks and safety alerts, HCPs on the contrary were concerned that unspecific alerts confuse patients and lead to nonadherence. Furthermore, HCPs were opposed to patients’ ability to withhold or restrict access to information in the platform. To optimize usability, there was consensus among participants to display information in a structured, chronological format, to provide information in lay language, to use visual aids and customize information content, and align the platform to users’ workflow. Conclusions By employing a UCD, this study provides insight into the desired functionalities and usability of patients and HCPs regarding a shared patient-centered, Web-based medication platform, thus increasing the likelihood to achieve a functional and useful system. Substantial and ongoing engagement by all intended user groups is necessary to reconcile differences in requirements of patients and HCPs, especially regarding medication safety alerts and access control. Moreover, effective training of patients and HCPs on medication self-management (support) and optimal use of the tool will be a prerequisite to unfold the platform’s full potential.

Einfluss einer elektronischen Patientenakte (EPA) auf das Arzt-Patienten-Verhältnis: eine systematische Übersicht der medizinethischen Implikationen

ZusammenfassungIn einem Modellprojekt soll durch die Einführung einer persönlichen, einrichtungsübergreifenden, elektronischen Patientenakte (PEPA) nicht nur die Behandlungskontinuität verbessert, sondern auch das Recht auf informationelle Selbstbestimmung dahingehend realisiert werden, dass jeder Patient zum Administrator einer Datencloud gemacht wird, die alle seine Gesundheitsdaten enthält. Eine systematische Literaturrecherche zum Thema „elektronische Patientenakten (EPA)“ soll mögliche ethische Herausforderungen in Verbindung mit der oben genannten PEPA antizipieren. Von initial 2487 Publikationen wurden 51 Publikationen ausgewertet: 30 empirische Studien, 10 medizinethische Analysen und 11 Meinungspapiere. In den empirischen Studien wurden als erste Effekte einer EPA vor allem eine vollständigere medizinische Aktenlage beschrieben. Mit der Einsichtsmöglichkeit für den Patienten in die EPA konnten zusätzlich ein besseres Krankheitsverständnis und damit erhöhte Compliance des Patienten nachgewiesen werden. Eine Verbesserung der Behandlungsqualität wurde auf die Fehlervermeidung durch Patienteneinsicht, effektivere Nutzung der Arzt-Patienten-Besuche und das verbesserte Verständnis für das Therapiekonzept zurückgeführt. Ebenfalls wurde in den Studien eine Stärkung des Vertrauensverhältnisses von Arzt und Patient beschrieben. Bedenken gab es im Vorfeld vieler Studien hinsichtlich des Datenschutzes, eines möglichen Verlustes der persönlichen Arzt-Patienten-Beziehung und einer potentiellen Überforderung des Patienten. In der Beurteilung der EPA spielte die Abwägung zwischen ärztlicher Fürsorge und Patientenautonomie eine große Rolle. Die von medizinethischer Seite geäußerten Bedenken bezüglich eines Vertrauensverlustes oder einer Störung des Arzt-Patienten-Verhältnisses konnten in den empirischen Studien nicht bestätigt werden. Die befürchteten Risiken im Datenschutz wurden von den Betroffenen zugunsten des potentiellen Nutzens einer EPA abgewogen. Unter Wahrung des Datenschutzes hat daher die PEPA das Potential, durch die Mitbeteiligung des Patienten das Arzt-Patienten-Verhältnis positiv zu beeinflussen. Die spezifischen ethischen Herausforderungen, die mit der Co-Verwaltung der PEPA einhergehen, werden im Modellprojekt untersucht.AbstractBackgroundIn a model project, the implementation of a comprehensive, personal electronic patient record (PEPA) shall not only improve consistency of care, but also realize the right to informational self-determination to the effect that every patient is made administrator of a data-cloud containing all his medical data. A systematic literature review on the topic “electronic health records (EHR)” anticipates possible ethical challenges in connection with the mentioned PEPA. Of the initial 2487 publications, 51 articles were analyzed: 30 empirical studies, 10 medical ethics analyses, and 11 comments.ResultsIn the empirical studies, a more comprehensive medical record was described as an initial effect. The option for access to the EMR by the patient resulted in a better understanding of the needed medical care and thereby higher compliance by the patient. An improvement of the quality of medical care was attributed to prevention of medical errors through the access to records by the patient, a more effective utilization of physician–patient visitations and an improved understanding of the therapeutic concept. Studies also showed a strengthening of the bond of trust in the physician–patient relationship. Concerns were related to data security, possible decline in the personal physician–patient relationship and potential excessive demands on the patient.DiscussionIn an assessment of the EMR, weighing beneficence against patient autonomy plays a major role. Concerns by medical ethics pertaining to a loss of trust or a disturbance of the physician–patient relationship could not be proven empirically. The feared risks to data security were weighed by those affected in favor of the potential benefits of the EMR. Provided that data are protected, the PEPA has the potential to influence the physician–patient relationship positively through participation of the patient. The specific ethical challenges associated with the co-administration of PEPA will be examined in the pilot project.