Open science includes multiple principles: for publications (open access), data sets (open data) and software/application code (open source). Other examples include open-source models for sharing intellectual property and open governance practices. While the application and interpretation of the principles of open science can vary across platforms and countries (for example, whether single articles or entire journals are open access) the goals are the same: to bring research results to the surface and to improve transparency by making information available to the most people as efficiently as possible.

Open access journals
Open access journals offer full access to articles with no fees to the end-user. They are primarily published online and anyone — from the public to a clinician, program manager or policymaker — can easily access the published work. As of December 2021, there were 17,214 open access journals from 130 countries listed in the Directory of Open Access Journals. All open access journals listed in the DOAJ must follow the “Principles of transparency and best practice in scholarly publishing,” a set of standards and best practices created by the DOAJ, Committee on Publication Ethics, Open Access Scholarly Publishers Association and World Association of Medical Editors. And just like traditional publications, many open access journals follow rigorous peer-reviewed processes for article solicitation and selection.

There are supports in place for journal publishers and funding bodies to guide the transition from traditional to open access publishing. In 2018, cOAlition S, an international group of research organizations, published its Plan S principles to help move the needle on open access publishing. Organizations that agree to implement the principles commit to transition to open access within one year of the agreement.

While readers have no fees to pay, open access journals may still have article processing charges, or APCs. These fees are paid by the author or a funding body for the article to be published as open access. Waivers can be obtained for APCs in some situations. It’s worth taking time to research the fee waiver process, because these fees can amount to thousands of dollars, depending on the journal. Even if the entire publication isn’t fully open access (known as Gold Open Access), an author can pay for an open access license in a hybrid journal (a mix of open access and subscription) for the article they have written. Again, the APC can be cost-prohibitive, but an author, author’s organization or a funding body may be willing to pay the APC so the published work can be more widely shared.

There are different types of licenses for content in terms of requirements for attribution and any restrictions such as limitations on commercial use, so it is important to check any publisher or funding entity requirements related to licensing. Many open access licenses fall under Creative Commons; learn more about these licenses here. In addition, if the research received outside funding, the funder may require any resulting publications be open access. The Bill & Melinda Gates Foundation, for example, has had an open access policy in place since 2015 for its funding recipients and awardees. Under this policy, “all peer-reviewed published research funded, in whole or in part, by the foundation, including any underlying data sets” must have unrestricted access. Finally, federally funded research, such as by the National Institutes of Health, is made publicly available through PubMed Central as part of NIH’s Public Access Policy.

Open data
Open data involves the placement of data sets in publicly accessible online locations for download or the unlimited provision of datasets via electronic file delivery by direct request. Open data is not new, particularly when it comes to the government. Since 2009, there have been government policies for open data. According to the World Bank’s Open Data Toolkit, more than 250 governments and 50 countries have open data initiatives. The Open, Public, Electronic and Necessary Government Data Act of 2018 expanded the open data policy for the U.S. federal government and requires agencies to “publish information as open data by default, as well as develop and maintain comprehensive data inventories.” There also are global and national open data repositories, such as World Bank Open Data, UNData (United Nations), GODAN (Global Open Data for Agriculture and Nutrition) and Data.gov, the U.S. Government Open Data Portal.

The more data that’s made available, the more opportunities for secondary analysis; consolidation of smaller data sets into big data that can be mined for patterns and learnings; and future research projects that take what has been done to the next level. This can mean a bigger patient pool, a larger demonstration project, a revamped intervention approach and more.

Any data collected as part of surveys, electronic health records or other forms or processes can be made “open” as well, depending on the policies in place and the terms of use agreements signed by data contributors. This data can then help further knowledge and learning and be a powerful tool for designing interoperable systems; modeling use cases (such as descriptions or flowcharts of how a user might interact with a technology tool or perform a certain task); creating maps for exploring social determinants of health or tracking health or disease data; applying artificial intelligence or “smart” applications; and identifying common pathways for access to services and provision of care.

While there are many benefits of open data, there are ethical considerations to ensure health data is handled appropriately. For example, when researchers and practitioners have access to and can compare data sets that include both social and health information, they can more readily identify and address health equity challenges in designing and delivering programs.

But wait. Are open access journals as reputable as traditional journals?
It is a misconception that open access journals do not follow rigorous peer-reviewed processes. If a journal — whether traditional or open access — is peer-reviewed, the process will follow a framework for ensuring high-quality research is published. Before submitting any manuscript, research the journal, ask colleagues who are familiar with it or request information from your local library or academic institution.

Data privacy
Many open access journals now require, at the manuscript submission stage, that authors attest that data from the research will be made publicly accessible. One example is the Dataverse Project by Harvard University, which offers a free open-source platform for data to be published and shared. It also links the data to the original research and offers users the option to download data in formats that can be inputted into statistical analysis software.

Data published as part of an open data platform need to be de-identified. This means all personally identifiable information, or PII, is removed. The National Institutes of Health defines PII as “information that can be used to distinguish or trace an individual’s identity, either alone (direct) or when combined with other personal or identifying information that is linked or linkable to a specific individual (indirect).” Examples include names, emails and home addresses. Social security numbers, driver’s license numbers, biometrics and medical or financial records are considered “sensitive PII” and require more stringent handling. The International Association of Privacy Professionals offers information and guidance on de-identifying data for open publishing.

In the health care setting, PII is referred to as protected health information, or PHI, and is governed by the Health Insurance Portability and Accountability Act, also known as the HIPAA Privacy Rule. There are times when components of this information can be shared, such as for disease tracking and surveillance, but criteria for HIPAA-permitted uses and disclosures must be adhered to. The U.S. Department of Health and Human Services provides guidance for effectively de identifying PHI when sharing data, including using “Expert Determination” to certify data and assess risk using statistical analysis or the “Safe Harbor” method, which globally removes key identifiers such as dates and social security numbers.

Another concern can be the re-identification of an individual when data sets are linked together. A study published in 2020 in Environmental Health Perspectives reviewed data and methods from 12 environmental health studies and identified data types that were vulnerable to linkages. These included data related to family members, genetics, medical care, housing and occupations. Given the large amounts of data gathered through formal research, as well as through web browsing, social networking, mobile apps, retail purchases and more, it is essential that data privacy and security standards be followed and upheld through the open data process.

Putting it all together
Access to data is essential to the Academy’s work in meeting its Research Priorities, a collection of emergent research needs that, if addressed, would have the greatest impact on knowledge advancement and empowerment of nutrition and dietetics practitioners. Work toward these priorities could be accelerated with increasing opportunities for data sharing. On eatrightPRO, members can find collections of secondary data sets as well as information on the Academy’s Nutrition Research Network.

For nutrition and dietetics professionals, especially those in research, you can put an open science lens on your work. From participating in knowledge exchange forums to pursuing publication in open access journals and submitting your data to open data portals, you can generate and advance evidence and best practices for the value of nutrition and the work of RDNs and NDTRs.

The more research and data are transparent and available, the more they can be used in collective efforts to improve programs and services, strengthen quality of care and increase positive patient outcomes. One example of this is Electronic Clinical Quality Measures, which use data from electronic health records and health information technology systems to measure the quality of care.

As a program manager or funding entity, you can put into your requirements that any research and data be made open and accessible. Not only would you have access, but so would the nutrition community and the world. And when barriers to science are broken down, we all can be better communicators of nutrition messaging that is evidence-based and showcases data utilizing graphic design and data visualization best practices.

The result: bringing the data to life, making it “here and now” and, through robust dashboards, charts and apps, putting the control of it in the hands of patients and clients, partners and fellow health professionals.

Additional Resources to Learn More

• Center for Open Science: https://www.cos.io/
• Data.Gov: https://www.data.gov/
• Federal Data Strategy: https://strategy.data.gov/
• Gates Open Research: https://gatesopenresearch.org/
• Harvard University Dataverse Project: https://dataverse.harvard.edu/
• HealthData.gov: https://healthdata.gov/
• Mind the Gap Report: https://mindthegap.pubpub.org/
• Office of Data Science Strategy (NIH): https://datascience.nih.gov/
• Open Data Barometer: https://opendatabarometer.org/
• Open Data Institute: https://theodi.org/
• Open Knowledge Foundation: https://okfn.org/opendata/
• Open Science Project: https://openscience.org/
• PLOS Open Data: https://plos.org/open-science/open-data/

References

A De-Identification Protocol for Open Data. International Association of Privacy Professionals website. https://iapp.org/news/a/a-de-identification-protocol-for-open-data/. Accessed October 4, 2021.
Boronow K, Perovich L, Sweeney L, et al. Privacy Risks of Sharing Data from Environmental Health Studies. Environ Health Perspect. 2020;128(1):17008.
Cantor M, Chandras R, Pulgarin C. FACETS: using open data to measure community social determinants of health. J Am Med Inform Assoc. 2018;25(4):419-422.
Cocoros N, Kirby C, Zambarano B, et al. RiskScape: A Data Visualization and Aggregation Platform for Public Health Surveillance Using Routine Electronic Health Record Data. Am J Public Health. 2021;111(2):269-276.
Demski H, Garde S, Hildebrand C. Open data models for smart health interconnected applications: the example of open EHR. BMC Med Inform Decis Mak. 2016;137(16).
Directory of Open Access Journals website. https://doaj.org/. Accessed October 3, 2021.
Electronic Clinical Quality Measures (eCQMs). Academy of Nutrition and Dietetics website. https://www.eatrightpro.org/practice/quality-management/quality-improvement/malnutrition-quality-improvement-initiative. Accessed October 13, 2021.
Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. Department of Health and Human Services website. https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html#determinations. Accessed October 13, 2021.
How HIPAA Supports Data Sharing. Office of the National Coordinator for Health Information Technology website. https://www.healthit.gov/topic/interoperability/how-hipaa-supports-data-sharing. Reviewed September 6, 2018. Accessed October 13, 2021.
Levin N, Leonelli S, Weckowska D, Castle D, Dupré J. How Do Scientists Define Openness? Exploring the Relationship Between Open Science Policies and Research Practice. Bull. Sci. Technol. Soc. 2016;36(2):128-141.
Open Access Policy FAQ. Gates Foundation website. https://www.gatesfoundation.org/about/policies-and-resources/open-access-policy-faq. Accessed October 22, 2021.
Open Data in 60 Seconds. World Bank Open Government Data Toolkit website. http://opendatatoolkit.worldbank.org/en/open-data-in-60-seconds.html. Accessed September 22, 2021.
Open Data: Agencies Need Guidance to Establish Comprehensive Data Inventories; Information on Their Progress is Limited. U.S. Government Accountability Office website. https://www.gao.gov/products/gao-21-29. Accessed October 4, 2021.
Payne P, Lele O, Johnson B, Holve E. Enabling Open Science for Health Research: Collaborative Informatics Environment for Learning on Health Outcomes (CIELO). J Med Internet Res. 2017;19(7):e276. Published July 31, 2017.
Peregrin T. Social Determinants of Health: Enhancing Health Equity. J Acad Nutr Diet. 2021;121(6):1175-1178.
Public Access Policy. National Institutes of Health website. https://publicaccess.nih.gov/. Accessed October 13, 2021.
The Dataverse Project website. https://dataverse.org/. Accessed October 13, 2021.
Toolkit for Patient-Focused Therapy Development. United States Department of Health and Human Services website. https://toolkit.ncats.nih.gov/glossary/personally-identifiable-information/. Accessed December 10, 2021.
Transparency and Best Practice. Directory of Open Access Journals website. https://doaj.org/apply/transparency/. Accessed September 22, 2021.

Smart refrigerators offer touch screens that connect you to your favorite online grocery delivery service. Some even have a video camera built in that allows you to see what you have (or don’t have) in the refrigerator when you are out shopping. Built-in or third party voice-activated recording tools allow you to speak your grocery list and then a mobile app allows you to access it from the store.

Some of the newest ovens are set up for wireless connectivity and allow you to preheat the oven on your way home from work via a phone app. Other handy features include increasing or decreasing the cooking temperature and notifying you when the food is done and turning off the oven. Digital and Bluetooth features of slow cookers, pressure cookers, pans and more have freed the home chef from waiting for food to finish cooking.

Virtual reality is the next area of focus for cooking technology. From the cookbook to watching your favorite chefs demonstrate technique via video clip, now you can immerse yourself in a cooking class from your own home via virtual reality apps and tools. Learn to cook Italian food from Italy or from within your favorite restaurant. The possibilities are endless when cooking in the kitchen meets cooking in the “cloud.”

Breast-feeding provides numerous benefits to women and their babies but support is essential. From providing anticipatory guidance during pregnancy to reaching moms during their hospital stay and checking on them at home, health care providers and peer counselors have the ability to provide parents with evidence-based information and resources to not only help them make better decisions about breast-feeding but to maintain breast-feeding — even through the challenging times.

Mobile apps and tools for providing breast-feeding support are transforming how moms receive care.  “Telelactation” allows a board-certified lactation consultant to reach moms in rural areas and also when limited time and busy lifestyles get in the way of “seeing” how a mom and her new baby are doing during this important time.

Watching the baby latch via webcam, answering questions about milk supply, and providing that “just-in-time” education all are services that can help make a difference in a mom’s breast-feeding experience. Online support groups also can connect new moms who may feel isolated during those first few weeks at home. Research in this area is growing, and it is exciting to see how it will develop. Dietitians who also are lactation consultants (a great career opportunity) or who partner with lactation consultants can take advantage of these tools and help moms — one latch at a time.

Since 2014, the Academy’s Health Informatics Infrastructure, or ANDHII, has been promoting efficient and accurate use of the Nutrition Care Process and the Nutrition Care Process Terminology, or NCPT. ANDHII has tools for RDNs and NDTRs to input, track and report patient outcomes. Data is collected, then standardized and integrated with the NCPT, which helps streamline it for analysis and reporting. This dynamic platform offers options for researchers (such as randomization and blinding), produces data sets that can be visualized and standardized, and creates individual visit summary information that can be submitted to management teams or incorporated into electronic health records, or EHRs.

As with all data collection, patient privacy is essential. ANDHII is designed to operate within regulations governing patient privacy and does not allow entry of identifying information such as names, birthdates or insurance numbers. Rather, it provides secure storage of de-identified data for research and outcomes assessment.

Whether in private practice or as part of a health care organization, RDNs and NDTRs can enter patient data and biometrics into ANDHII and track specific metrics. Marcia Bauer, RD, CDE, LMNT, says using ANDHII allows her to be more proficient and efficient at work. “I called those responsible for making EHR changes at the facility and explained what ANDHII is and how it can be used to benefit our facility, patient care and reimbursement,” she says. “Within a short time, a link to ANDHII was added to my nutrition assessment in the EHR.” Bauer also was able to participate in a diabetes study with ANDHII which benefits her patients. If health experts can better track outcomes, they can design more effective interventions.

Long before using ANDHII, Nicole Brown, MS, RDN, LD, ACSM, EP-C, focused on measuring patient outcomes. After learning about ANDHII, she saw an opportunity to examine private practice data in her state. The Health Outcomes and the Impact of Nutrition Care for Clients of Registered Dietitian Nutritionists in Private Practice surveillance study began as a pilot and now is moving into the study phase. The study will observe current practices of a small sample of RDNs working in private practice by having them enroll in and learn to use ANDHII, then enter and track patient data. Resulting data can be reviewed to identify trends in conditions with greatest impact, conditions with room for improvement and differences in cases or care patterns that result in changes to outcomes. The number of minutes a client spends with an RDN can vary, as well as how much (if any) of that time is covered by insurance.

Collecting and reporting data on health outcomes can help support licensure and health insurance coverage. “To be able to go to an insurance company and show how positive outcomes correlate to a certain number of visits or number of minutes per visit can be of great value,” says Brown. She also points out that using ANDHII and NCPT does take practice. “We started out taking 45 minutes to enter a patient visit into ANDHII, but were able to get it down to 15 minutes.”

Time is of the essence for busy practitioners, but the benefits of using ANDHII ultimately are worthwhile. RDNs in similar practice areas can connect via dietetic practice groups and state affiliates to undertake ANDHII projects. The Academy offers training and support, and ANDHII subscriptions are available at no cost to RDNs and NDTRs.

ANDHII is currently undergoing an upgrade to enhance mobile access and navigation. With data on more than 700 unique patients and 1,200 registry visits, ANDHII is on course to achieve status as a qualified clinical data registry with the Centers for Medicare and Medicaid Services, or CMS. This opens the door for interdisciplinary utilization of ANDHII as part of reporting efforts via CMS’ Quality Payment Program Framework. It also furthers opportunities for dietitians, as they are slated to be included in the Merit-based Incentive Payment System under a provision of the Medicare Access and Children’s Health Insurance Program Reauthorization Act (to be implemented in 2019). The timing couldn’t be better for RDNs and NDTRs to enroll in ANDHII and begin putting their mark on the future of dietetics practice.

 

We all are users of products in our daily lives and, as health professionals, we are in the usability business — we want to create nutrition products and services that meet the needs of our patients and clients, AKA our users. It is prudent to understand how efforts can be made to test products and tools before, during and after development, yet too often this step is skipped due to the potential costs, both in time and money, of conducting usability testing.

While there are businesses and experts that specialize in doing this type of testing both onsite at organizations and at independent testing facilities, there are resources that can be utilized by anyone interested in gathering feedback on a website, app, software program, training, etc. Usability.Gov offers templates and downloadable tools, and there are other online tools that allow for setting up remote usability testing, which translates into reaching users where they are.

By taking the time to “see” users engage in actions and tasks, such as entering daily food intake into an app that is being developed, it can help us see where the trouble areas are and where the user gets frustrated. This makes our end-product not only a better experience for the user, but a better value for our hard work.

Applying best practices and reaching new standards of nutrition communications through technology in the public health and community nutrition setting is more than my job — is it is my passion.

From teaching and training dietetic interns to consulting in the area of social media, I have had the opportunity to work with dietitians and other public health professionals to address the question of not just whether to use social media and IT tools, but how to use them and to what benefit.

RDNs Can Navigate for the Public

Registered dietitian nutritionists today have the exciting opportunity to be the hub of the communication network that connects the public to nutrition and health services. In order to do that, time must be spent researching, understanding and practicing with apps, gadgets, widgets and websites. A search of the Internet for health information produces an overwhelming number of results (not all of it accurate or evidence-based); RDNs can help clients navigate this sea of information. Or, even better, RDNs can become technology content developers and curators so that nutrition experts have a stronger voice in the media landscape.

So, where to begin? Besides keeping up on The Feed, spend time reviewing the social media best practices tools from the Mayo Clinic or the Centers for Disease Control and Prevention. Search out registered dietitian nutritionists on social media channels, podcasts and blogs. Stay up-to-date with the latest on the Academy of Nutrition and Dietetics' site, eatrightPRO. Listen to the conversation and decide where and when you want to join in. Just like other aspects of our personal and professional lives, it starts with small steps.