Getting health data sharing off the ground

May 09, 2018

Personalised medicine has the potential to improve the treatment and care of patients. This promising approach has already borne fruit, with a handful of targeted therapies for cancer now in use. For example, the molecular analysis of a tumour can identify specific genetic mutations and thereby what kind of chemotherapy would be most effective. This not only improves the patients' chances of recovery, it also saves them from having to endure unnecessary and ineffective treatments.

On the whole, however, personalised medicine is still in its infancy. To identify molecular causes of illnesses and develop tailored therapies, various data types from a multitude of sources must be aggregated. This entails collecting patient data from hospitals, the results of clinical tests, molecular and genetic data, as well as information about healthy people. Data sharing between hospitals, research institutions, clinicians and patients is thus essential. However, "to date, this kind of exchange hasn't been happening to the desired extent," says Effy Vayena, bioethicist and Professor at the Institute of Translational Medicine at ETH Zurich.

Guidelines for Switzerland

In Switzerland, the situation is set to change. Last year saw the launch of the Swiss Personalized Health Network (SPHN), an initiative created to promote the development of personalised health through the establishment of a data sharing infrastructure. Within this network, Vayena chairs an advisory committee that deals with the ethical, legal and social implications of precision medicine. "Our goal is to develop guidelines for responsible health data sharing," says Vayena.

As a first step, she and other ETH researchers investigated existing international guidelines and recommendations and analysed the range of topics they covered. They compared 230 documents published by official bodies, research institutions, expert groups and further national and international organisations between 1996 and 2017. This included publications by the Organisation for Economic Co-operation and Development (OECD), the National Institutes of Health (NIH) in the United States, and the Global Alliance for Genomics and Health. The results of this comparative study were published in the Health Affairs journal.

Important topics neglected

Their investigation highlighted that there was scarcely any cross referencing between the recommendations and guidelines and, moreover, that they were not sufficiently standardised. Guidelines focused primarily on three topics: data privacy, data quality, and the sovereign right of patients to determine how their data should be used. "These topics are very important, no question about it," says Vayena.

However, there are other important aspects that - viewed as a whole, across all the documents - received comparatively little attention. These include the question of who should be held responsible if patient data is used incorrectly - such as if it is used for a research project without the patient's consent. There is also the matter of how researchers can be acknowledged or rewarded for sharing their own research data with other scientists. "We won't be able to improve data sharing until we do more to tackle aspects like these," says Vayena.

Currently, a variety of obstacles stand in the way of this goal. These are partly of a technical nature - for example, the fact that hospitals cannot share data because their different systems for electronic health records are incompatible. There is also, however, a reluctance amongst researchers and companies to share data. In some cases, they do not want to reveal their hard-won data to competitors; in others, they balk at the cost and effort involved in making the information accessible by putting it in a database. Adding to the issue is that patients often hesitate to give consent for their data to be used, because they don't exactly know what will happen with it.

Innovative solutions are needed

"Future guidelines about data sharing should deal with as many of the identified hurdles as possible," says Vayena, who also highlights the need to develop innovative solutions, as previous approaches did not work well enough. For example, new technologies such as blockchain could be implemented as a method of data protection. Alternatively, an incentive system based on reciprocity could be created for researchers, whereby only those who put their own research data into a database could have access to the data of others. Furthermore, digital technologies could be harnessed to allow patients the option of not giving blanket consent for their data to be used in research, but instead tying their consent to individual projects - putting patients more in control.

Such considerations are to be incorporated into the guidelines developed as part of the SPHN initiative, which will then be implemented step by step. First, the guidelines will be adopted by the five Swiss university hospitals currently taking part in the SPHN initiative - that is, Zurich, Basel, Bern, Lausanne and Geneva. These hospitals are currently setting up clinical data management systems that make patient data available for research and facilitate data sharing with research institutions. At the same time, universities are establishing regional centres for the coordination and secure processing of biomedical data. Vayena is convinced of one thing: "If everyone involved in Switzerland signs up to the same well-designed standards, it will mean a giant step forward for data sharing and thus for personalised medicine."
-end-
Reference

Blasimme A, Fadda M, Schneider M, Vayena E: Data Sharing For Precision Medicine: Policy Lessons And Future Directions. Health Affairs 37, 2018, doi: 10.1377/hlthaff.2017.1558

ETH Zurich

Related Electronic Health Records Articles from Brightsurf:

Inclusion of patient headshots in electronic health records decreases order errors
Analysis of the millions of orders placed for participating patients over a two-year span showed the rate of wrong patient order entry to be 35 percent lower for patients whose photos were included in their EHR.

Opioid use disorder? Electronic health records help pinpoint probable patients
A new study suggests that patients with opioid use disorder may be identified using information available in electronic health records, even when diagnostic codes do not reflect this diagnosis.

Largest study to date of electronic dental records reviews understudied populations
The largest study to date of electronic dental records (EDRs) delves into both previously inaccessible data and data from understudied populations with the ultimate goal of improving oral treatment outcomes.

Electronic health records fail to detect up to 33% of medication errors
Despite improvements in their performance over the past decade, electronic health records (EHRs) commonly used in hospitals nationwide fail to detect up to one in three potentially harmful drug interactions and other medication errors, according to scientists at University of Utah Health, Harvard University, and Brigham and Women's Hospital in Boston.

Mass General team detects Alzheimer's early using electronic health records
A team of scientists has developed a software-based method of scanning electronic health records to estimate the risk that a person will receive a dementia diagnosis.

Yale study: Doctors give electronic health records an 'F'
The transition to electronic health records (EHRs) was supposed to improve the quality and efficiency of healthcare for doctors and patients alike -- but these technologies get an 'F' rating for usability from health care professionals, and may be contributing to high rates of professional burnout, according to a new Yale-led study.

Regenstrief scientist recommends ways to improve electronic health records
In an editorial in the Journal of General Internal Medicine, Regenstrief Institute research scientist Michael Weiner, MD, MPH highlights shortcomings of electronic health records (EHRs) in living up to their full potential, and suggests ways to use EHRs to work more efficiently and ultimately more effectively for patients.

FutureNeuro researchers integrate genomics data in to electronic patient records
Researchers from the HSE Epilepsy Lighthouse Project and FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases hosted by RCSI, have developed a new genomics module in the Irish National Epilepsy Electronic Patient Record (EPR) system.

New research finds private practice physicians less likely to maintain electronic records
The research led by Jordan Everson, Ph.D., assistant professor in the Department of Health Policy at Vanderbilt University Medical Center (VUMC), finds striking differences in use of electronic health records (EHRs) among more than 291,000 physicians included in the study.

Electronic health records decision support reduces inappropriate use of GI test
Programming a hospital's electronic health record system (EHR) to provide information on appropriate use of a costly gastrointestinal panel and to block unnecessary orders reduced inappropriate testing by 46% and saved up to $168,000 over 15 months, according to a study published today in Infection Control & Hospital Epidemiology, the journal of the Society for Healthcare Epidemiology of America.

Read More: Electronic Health Records News and Electronic Health Records Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.