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.

[Personal health records on the Internet. A narrative review of attitudes, expectations, utilization and effects on health outcomes]. / Persönliche Patientenakten im Internet. Ein narrativer Review zu Einstellungen, Erwartungen, Nutzung und Effekten.

BACKGROUND: The integration of information and communication technologies (ICT) is increasingly considered in the development of healthcare structures. This fact is also recognised in the e-Health Act. In this context, personal health records (PHR) have a specific meaning. The aim of this paper is to provide an overview on utilization, barriers and possible effects on the implementation of PHR. METHODS: This analysis is based on a literature search in Web of Science (Core Collection) (01/2000 to 12/2014) using the following terms: "personal health record", "personal medical record", "personal electronic health record", "interpersonal health record", "personally controlled health record". RESULTS: In general, patients have positive attitudes towards the electronic exchange of personal health information (PHI) on a PHR. Even the sharing of PHI with physicians, health professionals, family and friends appears to be an option for many patients. Physicians also see the potential of a PHR on the internet, but they are more critical than patients. Barriers exist towards the use of complex and non-intuitive PHR concepts along with technical faults and the lack of functionality. From the physicians' perspective, prejudices concerning the use of PHR have not been confirmed and, other than previously expected, the workload has not increased so much. However, clinical outcomes have so far been rather moderate. Stronger effects may be achieved by embedding the PHR in a broader healthcare concept. CONCLUSION: In the context of chronic disease, a connected PHR (patient-controlled, cross-sectoral, and interoperable) can be a valuable tool for organizing healthcare for patients. To take full effect, the development of such systems should focus on patients and their families as well as on physicians and other healthcare professionals. Whether the e-Health Act is a step in the right direction will have to be established by future analysis.

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).

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.

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.

Bridging the gap between patient needs and quality indicators: a qualitative study with chronic heart failure patients.

BACKGROUND: The German National Disease Management Guideline (NDMG) on chronic heart failure (CHF) derived nine clinical quality indicators (QIs) to enable assessment of quality of health care in patients with CHF. These QIs epitomize an evidence-based and somatic point of view of guided treatment, but little is known about the experiences and views of patients with their guideline-based treatment across multiple health care sectors. OBJECTIVE: The purpose of this qualitative study was to explore patient perspectives on guided treatment of CHF across multiple health care sectors. Furthermore, it was investigated to what extent patient perspectives are represented by the QIs of the German NDMG. METHODS: Using a qualitative approach, semistructured interviews were carried out with 17 CHF patients. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using qualitative content analysis. RESULTS: Patient-identified needs focused primarily on aspects like the doctor-patient relationship, communication, quality of individual-tailored information, and professional advice. Patients perceived shortcomings in processes of care such as communication and cooperation across health care sectors, especially at the transition between hospital and outpatient care. DISCUSSION: From the patient perspectives, the QIs do represent relevant somatic and clinical aims for quality measurement. However, deficits were identified, especially related to communication and cooperation across health care sectors. Given the fact that the inclusion of patient perspectives in quality improvement processes provides an important contribution to patient-centered health care, possible approaches for QI development such as direct and indirect patient involvement or generic vs disease-specific patient-related QIs should be the subject of future discussions.

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.

Personal electronic health records: understanding user requirements and needs in chronic cancer care.

BACKGROUND: The integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users' needs and daily practices is vital for adoption and use. OBJECTIVE: In order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions. METHODS: A qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis. RESULTS: For both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed. CONCLUSIONS: In order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA's health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.

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

PURPOSE: The 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. METHODS: A 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. RESULTS: The 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. CONCLUSIONS: Giving 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.