Introduction

Sync for science (S4S) is a program that was launched on February 25, 2016. The program seeks to facilitate the access to health data by patients and researchers in line with the objectives of the PMI (Precision Medicine Initiative). S4S will help patients share their health data in a structured electronic form with the PMI unit.

S4S will build on the already established open standards such as Argonaut, SMART Health IT, FHIR, and the Centers for Medicare & Medicaid Services (CMS) EHR Incentive Program. The S4S platform will enable individuals to connect their electronic health data to a research app facilitating the donation of their data for research.

Goals of the S4S project:

  • Promoting patient-mediated access to data.
  • Establishing structures that facilitate the sharing of individually-controlled health care data to the PMI cohort.

PMI (Precision Medicine Initiative)

PMI is a $215 million innovative research venture that was started by the US government in 2015 with the purpose of advancing individualized medical treatments. It hopes to develop individualized prevention and treatment strategies for every American citizen. Medical treatments are mostly intended for the average patient, but because of the varying factors among different patients, treatments can be successful in some patients but can have different results or even fail in other patients. Every patient is unique, and doctors have always acknowledged that; even simple techniques such as blood transfusion cannot prove to be efficacious without proper matching. Precision medicine will give doctors the tools that they need to tailor treatments or define the right dosage appropriate for a given patient.

So far, new and powerful discoveries have already been made in treating a variety of cancers (lung, breast and colorectal) as well as leukemias and melanomas.  Precision medicine has facilitated this with treatments being designed depending on the specific characteristics of a given patient or the profile of the tumor. Such treatments include Ivacaftor that treats a given form of cystic fibrosis. It is a much superior treatment as compared to the previous treatments that just addressed the symptoms but could not cure the disease. As part of patient care, patients that suffer from such conditions have to undergo molecular testing routinely so as to enable the physicians to choose the treatments that not only diminish exposure to adverse effects but also increase the chances of survival.

With precision medicine, medical professionals will be enabled to design a treatment based on the patient’s health history, microbiome composition (the composition of the microorganisms in a patient’s body), genome sequence, lifestyle, environment, and diet. This innovative approach intends to gather health and genetic data from U.S. participants. It is expected that those that will be enrolled to donate their health information under this project will be more than one million across the nation. With such a massive undertaking, the privacy of the health data submitted by the subjects has been given top priority by the White House including federal agencies and the Department of Health and Human Services in this project. Input from privacy and civil liberties advocates, bioethicists, patient groups and other technology experts is in line to ensure that any technical and legal issues concerning the security and the privacy of the shared data are addressed as stipulated in the Health Insurance Portability and Accountability Act (HIPAA). This HIPAA-compliant project will be implemented by the Harvard Medical School Department of Biomedical Informatics, the National Institutes of Health (NIH) and the Office of the National Coordinator for Health IT (ONC) in collaboration with EHR developers (Cerner, Allscripts, McKesson, Epic, drchrono and athenahealth). From over one million participants expected to take part, 700,000 will be enrolled via their health providers with the rest enrolling independently through S4S. For other EHR vendors willing to take part in this project, one of the first thing that they should do is join the Argonaut’s free, open Implementation Program. It will accelerate the basics of supporting FHIR with SMART’s OAuth profiles. It is expected that as S4S progresses the sample code, UX guidelines and documentation will be openly published for other vendors to build on.     

Conventionally, these assessments were administered through paper and pen method used in combination with pagers or electronic wristwatches (Delespaul et al. 1995). With the advancement in technology, electronic devices (PDA’s), and smartphone apps such as Qolty surpassed the traditional pen and paper technique. The surveys are usually short and completed within 1 to 2 minutes. The items are designed for prompt and easy data collection which usually comprise of open-ended questions, checklists or self-report Likert scales, and visual analog scales (Csikszentmihalyi et al. 2013).

Authorization for confidential and public information

S4S uses the OAuth2-based SMART on FHIR authorization definition. However, unlike the Argonaut, the S4S does not require support for Single Sign-on via OpenID Connect in, as a matter of fact, the minimum requirements are:

For a research participant to be able to start interacting with the PMI app and launch it into a workflow that connects to his portal or EHR, a ‘standalone launch’ may be needed.

‘confidential clients’ is an important authorization feature in S4S that can authorize either a client_id or client_secret as needed to gain access to the EHRs.

For an app that has been launched to get permission from the EHR to learn the FHIR id of a patient whose information is shared or to read all the available data to the participant the patient/*.read launch/patient offline_access authorization is necessary.

Integration with other interoperability efforts

With the passage of the 21st Century Cures Act, interoperability in healthcare IT is legally supposed to be achieved by the end of the year. It is a more urgent concern now than never before not only because of the legal implications imposed but also because of the goals set out in The Interoperability Standards Advisory for 2017 by the Office of the National Coordinator (ONCHIT).

The standards seek to facilitate interoperability by establishing implementation specifications and essential standards that are determined in collaboration with the majority of the healthcare IT vendors and other private and public sector partners.

Some of the important elements include:

No blocking of information

Use of standardized APIs

Facilitating patients’ data access.

To support the sharing of health information by patients, S4S will have to use standards and specifications that are applicable to all the various EHR vendors. In support of the ongoing interoperability efforts, the S4S will be set up on the already existing open specifications and standards (SMART Health IT, FHIR, CMS EHR Incentive Program, Argonaut). The adoption of the industry-wide open, standardized APIs aligns with the objectives of ONC of connecting and accelerating an FHIR ecosystem.

The S4S is meant to use a SMART Health IT and REST API OAuth profiles for security and the HL7’S FHIR specifications for data models. The Common Clinical Data Set will spell out the vocabularies and the scope of data access to be used. Most of the providers and vendors participating in the S4S are also taking part in the Argonaut project. The Argonaut project supports the adoption of the same open specifications across the industry. The vendors taking part in the S4S will, therefore, be able to leverage on the achievements of the Argonaut project.  

To provide high-quality care, it is crucial for medical professionals to have the complete picture of a given patient’s health record. This was not the case in the past, as the records that are outside one’s own four walls were not always readily accessible and would require effort in retrieving. The information that was readily accessible was only confined to one’s own institution (doctor’s office or hospital).

Sharing of information is still a critical piece in improving the general health care sector. While infrastructure is still needed to organize and capture data, it is of paramount importance that community leaders, individual and health care professionals gain access and share data, and then exploiting it to make better decisions. It is estimated that more than 200,000 Americans die each year on account of medical errors alone. IT has a great role to play in reducing this number and enabling advancement in the health sector.

IT can further contribute to the health sector decision making processes by availing relevant data to the medical professionals that would otherwise have not been available. The truth of the matter is that some of the most important health details of a person may not be found within a doctor’s office. Actually, health care may only contribute a small portion of the total sum of the health of an individual. To get the complete picture of a person’s health status, more information might be needed than is to be found in the electronic health record. It is for this reason that the JASON group has been tasked by the U.S. Department of Health and Human Services (HHS) to find a way of establishing a health information system that emphasizes on the health status of people and not just the health care that they get.

It is important to pursue this objective as in the current information age; there is an explosion of data from all walks of life that can help improve decisions in health. Data from patient collaborative networks, genomic data, from personal health devices, social media, and demographic/ environmental data may all be useful in one way or another. It is important to come up with an infrastructure that can capture, share and integrate all these diverse data elements while maintaining interoperability among the different EHRs. 

Advantages of the Sync for science program

Improve access to basic health data by researchers

Reduced in-person visits

Facilitate a more personalized technique of information gathering through patient participation

Help establish a core knowledge base for research scientists and health care providers to transform the health care system 

Revolutionizing the health care system

The S4S will greatly add value to activities of the EHR vendors by helping establish stronger health care systems, by empowering their customers and helping achieve the EHR Incentive Program demands for API-based patient access.

The S4S will also greatly facilitate research in health care and increase participation in studies. Researchers will have easy access to basic clinical data and essential details such as immunizations, lab results, problem lists, vital signs, and medications. The data will also be delivered with standard vocabularies in a structured format meaning that it will not need a lot of clean up as compared to the normal EHR data. It will also make it easier for those willing to contribute to scientific progress by participating in research to share their medical records with researchers readily without the need for in-person visits, faxed forms or other types of delays.

S4S will also be of great value to providers as it will enable them to let their patients benefit from taking part in research. While letting their clients take part in research and get whatever benefits due, it will not be at any extra cost, or increased workload for their staff as the vendor-supplied patient portal will take care of any support data requests.

Conclusion

Interoperability is still a top priority in supporting the efforts of building a better healthcare system. Unlocking healthcare information and data will empower healthcare providers as well as patients and families, making them active participants in their own care.

The Centers for Medicare and Medicaid Services (CMS) in line with the Medicare and Medicaid EHR Incentive Programs has mandated providers to offer APIs that enable the participants to access their data through an application that they may prefer. With this, the participants will have more options to aggregate, view and understand their health data. The S4S program will provide great revelation as to how this can be eventually executed across the industry. Demographics, medications and problem lists were the initial focus points of the S4S project as stipulated in ONC’s Common Clinical Data Set definition. It is expected that the future modules of S4S will assist the sharing of other data elements.

It is expected that APIs developed through this project will among other things: help providers to find ways of improving patient engagement, make it easier for patients to share their health record, help vendors develop new ways for their clients to meet the substantial use requirements for API-based patient access and make it much easier for the researchers to receive basic clinical data.

References

Miliard, M. (2017). NIH and ONC announce Sync for Science to enable patients to donate data to Precision Medicine Initiative. Healthcare IT News. Retrieved 24 March 2016, from http://www.healthcareitnews.com/news/nih-and-onc-announce-sync-science-pilot-enable-patients-donate-data-precision-medicine

White, j., Briggs, J., & Mandel, J. (2017). NIH and ONC Launch the Sync for Science (S4S) Pilot: Enabling Individual Health Data Access and Donation – Health IT Buzz. Health IT Buzz. Retrieved 21 March 2016, from https://www.healthit.gov/buzz-blog/health-innovation/nih-and-onc-launch-the-sync-for-science-pilot/

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