Making it work for me: beliefs about making a personal health record relevant and useable.

BACKGROUND: A Personal Health Record (PHR) is an electronic record that individuals use to manage and share their health information, e.g. data from their medical records and data collected by apps. However, engagement with their record can be low if people do not find it beneficial to their health, wellbeing or interactions with health and other services. We have explored the beliefs potential users have about a PHR, how it could be made personally relevant, and barriers to its use. METHODS: A qualitative design comprising eight focus groups, each with 6-8 participants. Groups included adults with long-term health conditions, young people, physically active adults, data experts, and members of the voluntary sector. Each group lasted 60-90 min, was audio recorded and transcribed verbatim. We analysed the data using thematic analysis to address the question "What are people's beliefs about making a Personal Health Record have relevance and impact?" RESULTS: We found four themes. Making it work for me is about how to encourage individuals to actively engage with their PHR. I control my information is about individuals deciding what to share and who to share it with. My concerns is about individuals' concerns about information security and if and how their information will be acted upon. Potential impact shows the potential benefits of a PHR such as increasing self-efficacy, uptake of health-protective behaviours, and professionals taking a more holistic approach to providing care and facilitating behaviour change. CONCLUSIONS: Our research shows the functionality that a PHR requires in order for people to engage with it. Interactive functions and integration with lifestyle and health apps are particularly important. A PHR could increase the effectiveness of behaviour change apps by specifying evidence-based behaviour change techniques that apps should incorporate. A PHR has the potential to increase health-protective behaviours and facilitate a more person-driven health and social care system. It could support patients to take responsibility for self-managing their health and treatment regimens, as well as helping patients to play a more active role when care transfers across boundaries of responsibility

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

Contains fulltext : 190871.pdf (publisher's version ) (Open Access)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

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

Contains fulltext : 152227.pdf (publisher's version ) (Open Access)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

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

Dominik Ose,1,2 Eva C Winkler,3 Sarah Berger,1 Ines Baudendistel,1 Martina Kamradt,1 Felicitas Eckrich,1 Joachim Szecsenyi1 1Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany; 2Department of Population Health, Health System Innovation and Research, University of Utah, Salt Lake City, UT, USA; 3Program for Ethics and Patient-oriented Care in Oncology, National Centre for Tumour Diseases, University Hospital Heidelberg, Heidelberg, Germany 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). Keywords: self-management, health care utilization, colorectal cancer, chronic care, health services research, complexit

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

Ines Baudendistel,1 Stefan Noest,1 Frank Peters-Klimm,1 Heidrun Herzberg,2 Martin Scherer,3 Eva Blozik,3 Stefanie Joos1,4 1Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany; 2Faculty of Health, Nursing, Administration, University of Applied Sciences Neubrandenburg, Neubrandenburg, Germany; 3Department of Primary Medical Care, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 4Institute for General Practice and Interprofessional Care, University Hospital Tuebingen, Tuebingen, Germany 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. Keywords: quality indicators, patient involvement, patient perspectives, chronic heart failure, national disease management guidelin

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

Gerda Längst,1 Hanna Marita Seidling,2,3 Marion Stützle,2,3 Dominik Ose,1 Ines Baudendistel,1 Joachim Szecsenyi,1 Michel Wensing,1,4 Cornelia Mahler1 1Department of General Practice and Health Services Research, University Hospital of Heidelberg, Heidelberg, Germany; 2Cooperation Unit Clinical Pharmacy, University of Heidelberg, Heidelberg, Germany; 3Department of Clinical Pharmacology and Pharmacoepidemiology, University of Heidelberg, Heidelberg, Germany; 4Radboud University Nijmegen Medical Centre, Scientific Institute for Quality of Healthcare, Nijmegen, the Netherlands 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. Keywords: medication information, patient–provider communication, type 2 diabetes, focus groups, primary car