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Journal Description

The Journal's mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice across a variety of participatory medicine areas of focus, including: patient and caregiver empowerment; patient-clinician partnership; use of technology to improve patients’ health and health care; participatory design and citizen science. Papers are published in six areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It will explore how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.

JoPM was self-published between 2009-2017 by the Society of Participatory Medicine, publishing over 200 peer-reviewed articles (Archive of pre-2017 articles). Since 2017, the journal is now proudly published by JMIR Publications, with the Society retaining editorial control (see joint SPM/JMIR Press Release).

All articles submitted after August 2017 are carefully copyedited and typeset, and XML-tagged for submission in PubMed Central and PubMed.

There are no publishing charges for unfunded research. There is a modest Article Processing Fee ($1500) in case of acceptance for grant-funded research or where authors have access to institutional open access funds, e.g. COMPACT/COPE signatories. 


Recent Articles:

  • Parent-created collage about how her child having a skin infection makes her feel. Source: Image created by the Authors; Copyright: Indiana Clinical and Translational Sciences Institute; URL:; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).

    Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization


    Background: Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant Staphylococcus aureus (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection. Objective: This study aimed to uncover MRSA decolonization outcomes that are important to patients and their parents in order to create a set of prototype measures for use in the MRSA Eradication and Decolonization in Children (MEDiC) study. Methods: A 4-hour, human-centered design (HCD) workshop was held with 5 adolescents (aged 10-18 years) who had experienced an I&D procedure and 11 parents of children who had experienced an I&D procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The research team analyzed the audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDiC comparative effectiveness trial. Results: The workshop identified 9 outcomes of importance to patients and their parents: fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden. Conclusions: This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTIs in the study design and trial development to determine meaningful patient-centered outcomes. We were able to identify 9 major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDiC, a prospectively enrolling comparative effectiveness trial. Trial Registration: NCT02127658;

  • The Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children study kit for helping families adhere to decolonization protocols. Source: Image created by the Authors; Copyright: The Authors; URL:; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).

    Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient...


    Background: Community-acquired methicillin-resistant Staphylococcus aureus (MRSA) skin and soft tissue infections affect many healthy children. A significant number of these children are hospitalized and require surgical incision and drainage (I&D). Once sent home, these children and families are asked to complete burdensome home decolonization and hygiene procedures in an effort to prevent the high rate of recurrent infections. Objective: This component of the Methicillin-resistant Staphylococcus aureus Eradication and Decolonization in Children (MEDiC) study aimed to develop a toolkit to assist MEDiC study participants in completing MRSA decolonization and hygiene procedures at home (the MEDiC kit). Methods: In all, 5 adolescents (aged 10-18 years) who had undergone an I&D procedure for a skin infection and 11 parents of children who had undergone an I&D procedure for a skin infection were engaged in a 4-hour group workshop using a human-centered design approach. The topics covered in this workshop and analyzed for this paper were (1) attitudes about MRSA decolonization procedures and (2) barriers to the implementation of MRSA decolonization and hygiene procedures. The team analyzed the audio and artifacts created during the workshop and synthesized their findings to inform the creation of the MEDiC kit. Results: The workshop activities uncovered barriers to successful completion of the decolonization and hygiene procedures: lack of step-by-step instruction, lack of proper tools in the home, concerns about adverse events, lack of control over some aspects of the hygiene procedures, and general difficulty coordinating all the procedures. Many of these could be addressed as part of the MEDiC kit. In addition, the workshop revealed that effective communication about decolonization would have to address concerns about the effects of bleach, provide detailed information, give reasons for the specific decolonization and hygiene protocol steps, and include step-by-step instructions (preferably through video). Conclusions: Through direct engagement with patients and families, we were able to better understand how to support families in implementing MRSA decolonization and hygiene protocols. In addition, we were able to better understand how to communicate about MRSA decolonization and hygiene protocols. With this knowledge, we created a robust toolkit that uses patient-driven language and visuals to help support patients and families through the implementation of these protocols. Trial Registration: NCT02127658;

  • Source: Flickr; Copyright: Nenad Stojkovic; URL:; License: Creative Commons Attribution (CC-BY).

    Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel


    Background: Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. Objective: This study aimed to assess healthy non-Hispanic white mothers’ attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. Methods: This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers’ willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. Results: The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers’ health care provider status, their motivation, and their privacy concerns. Mothers’ concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers’ motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). Conclusions: The findings of this study suggest that mothers’ privacy concerns affect their decisions to share sensitive data. However, mothers’ access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.

  • Source: Shutterstock; Copyright: sportpoint; URL:; License: Licensed by the authors.

    From Passive Patient to Engaged Partner: My Journey With Parkinson Disease


    This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

  • Source: freepik; Copyright: pressfoto; URL:; License: Licensed by JMIR.

    Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study


    Background: Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective: Given the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels? Methods: Research using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others’ views. Results: Participants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks. Conclusions: Maryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage.

  • Source: Imagine created by the Authors; Copyright: The Authors; URL:; License: Licensed by JMIR.

    Crafting Care That Fits: Workload and Capacity Assessments Complementing Decision Aids in Implementing Shared Decision Making


    About 42% of adults have one or more chronic conditions and 23% have multiple chronic conditions. The coordination and integration of services for the management of patients living with multimorbidity is important for care to be efficient, safe, and less burdensome. Minimally disruptive medicine may optimize this coordination and integration. It is a patient-centered approach to care that focuses on achieving patient goals for life and health by seeking care strategies that fit a patient’s context and are minimally disruptive and maximally supportive. The cumulative complexity model practically orients minimally disruptive medicine–based care. In this model, the patient workload-capacity imbalance is the central mechanism driving patient complexity. These elements should be accounted for when making decisions for patients with chronic conditions. Therefore, in addition to decision aids, which may guide shared decision making, we propose to discuss and clarify a potential workload-capacity imbalance.

  • Source: ShutterStock; Copyright: adriaticfoto; URL:; License: Licensed by the authors.

    Relationship Between Health Literacy and Social Support and the Quality of Life in Patients With Cancer: Questionnaire Study


    Background: Low health literacy is associated with factors such as not taking medication as prescribed as well as poor health status and increased hospitalization and mortality risk, and has been identified as a risk factor for decreased physical function in older individuals. Health literacy is becoming an increasingly important issue because of the increased number of people affected by cancer who must make complicated treatment decisions. Health literacy has been shown to be positively associated with quality of life (QOL), and social support has been identified as important for addressing health-related problems and reducing the relative risk of mortality in patients with cancer. However, few studies have examined the relationship between health literacy, social support, age, and QOL. Objective: The aim of this study is to examine the effects of health literacy, social support, and age on the QOL of patients with cancer. Methods: An anonymous, self-administered online questionnaire was conducted from March 28 to 30, 2017, in Japan on patients with lung, stomach, or colon cancer that were voluntarily registered with an internet survey company. The survey covered basic attributes, health literacy, social support, and QOL. The European Health Literacy Survey Questionnaire, a comprehensive measure of health literacy instrument, was used to measure health literacy; the Japanese version of the Social Support Scale was used to measure social support; and the Japanese version of the Functional Assessment of Cancer Therapy-General (7-item version) assessment tool was used to measure QOL. Results: A total of 735 survey invitations were randomly sent to patients with lung, stomach, or colorectal cancer, and responses were obtained from 619 (82.2% response rate). Significant effects on the QOL in patients with lung, stomach, or colon cancer were observed for health literacy, social support, and age, and for the interactions of health literacy and social support and of social support and age. Health literacy, social support, and the interaction between these variables also showed a significant effect on the QOL in patients 50 years or older, but not on those younger than 50 years. Conclusions: The results of this study revealed that higher health literacy, social support, and age were associated with the QOL in patients with cancer. In addition, the relationship with QOL was stronger for social support than for health literacy. These findings suggest the importance of health literacy and social support and indicate that social support has a greater effect on QOL than does health literacy, while the QOL in patients with cancer aged younger than 50 years was lower than that of those 50 years or older. Therefore, elucidating the needs of these patients and strengthening social support based on those needs may improve their QOL.

  • Source: Pixabay; Copyright: janeb13; URL:; License: Licensed by the authors.

    Traumatic Brain Injury and Sexuality: User Experience Study of an Information Toolkit


    Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of functional impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written materials and nonwritten media. Objective: A user-centered design was adopted to codevelop four audiovisual presentations, a double-sided information sheet, and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project was the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model. Methods: Overall, two small group discussions and one individual semistructured interview were conducted with individuals with moderate to severe TBI. Results: The participants mentioned that the toolkit was easily usable and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well-organized, attractive, and relevant. The information was easily located, the tools were accessible in terms of reading and visibility, and the content was also considered credible. Conclusions: Aspects such as usability, usefulness, desirability, accessibility, credibility, and findability of information were viewed positively by the participants. Further piloting of the toolkit is recommended to explore its effects on the awareness of the potential sexual repercussions of TBI in individuals and partners.

  • Source: Pixabay; Copyright: StartupStockPhotos; URL:; License: Licensed by JMIR.

    The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study


    Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia. Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia. Methods: A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections. Results: The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement. Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.

  • Source: Freepik; Copyright: pressfoto; URL:; License: Licensed by JMIR.

    The Participatory Zeitgeist in Health Care: It is Time for a Science of Participation

    Authors List:


    Participation in health care is currently the zeitgeist/spirit of our times. A myriad of practices characterizes this “participatory Zeitgeist” in contemporary health care, which range from patients and professionals collaborating as partners in service delivery and treatment decision-making, to crowdsourced cures and participation in online communities, to using health apps, to involvement in health care quality improvement initiatives for systems redesign using coproduction and co-design methods. To date, patient engagement and participation in online communities and the use of apps have received a good deal of attention in participatory medicine. However, there has been a less critical examination of participation in health care planning, design, delivery, and improvement. In the face of what Thomas Kuhn called a scientific revolution, we are presented with the opportunity to re-examine some of the assumptions underpinning participation in health care and some of the emerging anomalies and weaknesses in the current science. This re-examination will allow the development of a new paradigm, a science of participation. In this science, we can systematically test, refine, and advance participation in health care to build a unifying language and theories from across the interdisciplinary fields of participatory design, medicine, and research to develop and test models to explain impacts and outcomes. A science of participation will allow the emergent and unexplained facts to be addressed in the current participatory mood of health care planning, design, delivery, and improvement.

  • Source:; Copyright: Amy Hirschi; URL:; License: Licensed by JMIR.

    The “Preparation for Shared Decision-Making” Tool for Women With Advanced Breast Cancer: Qualitative Validation Study


    Background: The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective: Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods: We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results: Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions: This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool’s implementation in the clinical workflow and its impact on patient outcomes.

  • Physician reviewing quality of life data with patient. Source: Pxhere; Copyright: / 3353 Images; URL:; License: Public Domain (CC0).

    Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study


    Background: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. Objective: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. Methods: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury–specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. Results: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. Conclusions: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery. Clinical Trial: We did not publish a protocol/proposal that the current paper reports the results of.

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  • Beyond Known Barriers – Assessing physician perspectives and attitudes towards introducing Open Records in Germany: Qualitative study

    Date Submitted: Apr 3, 2020

    Open Peer Review Period: Apr 3, 2020 - May 29, 2020

    Background: Having access to medical records can improve patients’ health literacy, self-care, treatment adherence, and can facilitate the doctor-patient-communication. Approaches based on the Open...

    Background: Having access to medical records can improve patients’ health literacy, self-care, treatment adherence, and can facilitate the doctor-patient-communication. Approaches based on the Open Record concept aim at achieving these goals. In Germany, patients are entitled by law to have access to their medical records. However, while Open Record projects have been successfully implemented in primary care in the USA, they remain an exception in Germany. So far, research has been focused on organizational implementation barriers. However, little is known about factors that might influence physicians’ attitude, support, or reluctance towards opening records in German primary care. Objective: This qualitative study aims to provide a better understanding of attitudes towards opening records in primary care in Germany. To expand the knowledgebase future implementation programs could draw from, it focuses on professional self-conception as an influencing factor regarding the approval for Open Records. As professional self-conception might change from generation to generation and biographically, perspectives and attitudes of practicing primary care physicians and advanced medical students were to be explored. Methods: Data were collected through semi-structured guide-based interviews with general practitioners and advanced medical students. Participants were asked to share their perspectives on Open Records in German general practices, as well as perceived implications, their expectations for future medical records, and the conditions for a potential implementation. Data were pseudonymized, audiotaped, and transcribed verbatim. Themes and subthemes were identified through thematic analysis. Data were organized and coded by using MAXQDA Standard 2018 (Release 18.2.0). Participant characteristics were analyzed descriptively by using Microsoft Excel (Release 16.28). Results: Barriers and potential advantages were reported by 7 GPs and 7 medical students (n=14). The barriers (1) data security, (2) increased workload, (3) costs, (4) the patients’ limited capabilities, and (5) the physicians’ restraints were identified. As advantages, (1) patient education and empowerment, (2) positive impact on the practice, and (3) improved quality of care were mentioned in the interviews. GPs’ professional self-conception influenced their approval for Open Records: GPs considered their aspiration for professional autonomy and freedom from external control to be threatened and their knowledge-based support of patients to be obstructed by Open Records. Conversely, medical students emphasized the chance of encouraging patients and achieving shared decision making through Open Records. While students expected the implementation in Germany to be realistic in the near future, GPs were more hesitant and voiced a strong resistance towards sharing personal notes. Reliable technical conditions, the participants’ consent, and a joint development of the implementation project to meet the GPs’ interests were requested. Conclusions: Open Records was proven beneficial before and can be a chance to improve health care. Although the medical students’ positive attitude towards the concept provides an optimistic view for a future implementation, the GPs’ professional values have to be respected and complied with. Further research and a broad support of decision makers is crucial to realize the opportunities related to giving patients access to their records in Germany.