The advent of mobile applications for health, telemedicine and connected devices, now allows the exchange of health data like never before. However, are patients using these digital technologies willing to share these pieces of their private life with the actors of the medical field? Yes, numerous recent studies demonstrate patient’s willingness and desire to share their health data, but under certain conditions.
The future is a precision-based, patient-centered and personalized medicine. In order to develop new therapeutic opportunities, improve monitoring and medical care, the exchange of computerized health data is evident to a growing number of Governments and health actors. However, many obstacles still hinder the use of these data. Technical limitations, financial constraints, lack of interoperability, privacy and security concerns are the most frequently mentioned barriers. One of the most important factors that may hinder the widespread adoption of health data exchange is support from patients themselves! Their consent and attitude toward the sharing of their medical information depends on the development of new solutions and systems based on the use of computerized medical records (EMRs), those that originate from real life (Real World Evidence, RWE) and from patient reported outcomes (PROs).
Perception of benefits...
In a somewhat surprising way, and despite the expected benefits from the sharing of digital data, the challenge of patient acceptance is still poorly studied. In 2017, however, Pouyan Esmaeilzadeh and Murali Sambasivan* did a review of the existing literature on the issue. One hundred and ninety-six articles published since 2005 were initially extracted from the databases. Of this total, thirty-six met the inclusion criteria and were fully reviewed. What was the outcome? That the perceived benefits are essential part of the patients' willingness to contribute to the sharing of their medical data. "The potential benefits of exchanging health information, such as, improving the quality and safety of health care, can persuade them to consent to this type of exchange”, they said. And if we believe the review made by these authors, it seems that this approval can be globally achieved. What are they actually saying? Most of the time, "Patients perceive several benefits associated with the technologies of sharing of medical information, such as convenience, accelerated care, high quality of care and reduction of health care bills”. Patients who experience these benefits seem to even enthusiastically support government initiatives to adopt and scale up medical data sharing technologies. Some are even willing to recommend doctors who use such tools to their friends or family members!
Perception of risks
Take heed, however, warn the authors: "Consumers can, conceptually, support the development of health information technologies and infrastructures that allow the exchange of medical data, but there is no guarantee that they are actually ready to exchange their personal health information”. As a result, though patients seem willing to consent to the sharing their medical data, they equally seem very concerned over the issues related to transparency, privacy, security, individual control involving who can access the data and for what purpose. The authors also highlighted that, "Studies show that patients are more likely to outsource their medical information to health professionals but less willing to share it with other stakeholders such as government agencies, insurers or researchers. Nor do they want their personal information disclosed for purposes other than clinical care. In the event of a principle agreement, however, patients may not be willing to share confidential information with doctors, if they are unsure of the confidentiality of the data, even if this information is essential for their treatment."
In the specific context of the United States, the authors have been calling for better protection of users' personal data. From a more general point of view, they also plead for additional information efforts to be made for patients. "When patients are aware of the potential benefits of data sharing, they are more likely to support the initiatives in this area," they explain. They finally note that, new strategic approaches to confidentiality are equally needed. "Policymakers should devise new strategies to ensure patients' right to informed consent, so as to better reflect the real and perceived risks to privacy and the security of medical data sharing. Patients are more likely to endorse it when they are convinced that the potential benefits far outweigh the potential risks."
Confidentiality and ethics, an example from Andaman7
Andaman7 is a patient-centered mobile application (the project itself was created and is managed by patients). Its primary objective is to allow every patient to be able to manage their own medical data, as well as those of their relatives (children, spouse, parents...). Since data is only stored on the Smartphones, privacy and security are maximized: no data is stored in the Cloud. At first, only the patients themselves have access to their data - and if they decide to share, patients also have total control over who has access to their data. Indeed, Andaman7 also allows data sharing, though in a simple and highly secure way; but this is always on the patient’s initiative. It’s the patient who decides whether he/she wishes to share data, which and with whom. This sharing can be stopped at any time. And this is where Andaman7 shines: it also helps in the contribution to medical research (RWE, PRO, clinical studies ...) and to home and non-hospital-based care. The platform can be integrated with hospital-existing tools, in order to facilitate contact with patients. These patients are then invited to participate in clinical studies, care paths, remote monitoring ... though always after the explicit consent from the patient. These makes Andaman7 one of the first platforms in the world to be truly patient-centered, which doesn’t store data in the Cloud, and yet still facilitate medical research and care, without compromising privacy or security. As part of its social project, Andaman7 is available for free, to all individual users. Financial contributions come from hospitals and medical research, through access to patients and their health data. For the purpose of clinical studies, this data can even be anonymized.
* Source: Patients’ support for health information exchange: a literature review and classification of key factors.
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