Discussion 1:
In order to protect patient data and ensure that the data is not being misused, information stewardship must be practiced by healthcare organizations and its employees. Stewardship is the ethics concerning information generated from protected health information and the responsible utilization of the information to the best interests of members of the healthcare organization, society, but mainly to patients themselves. This is especially true regarding community health data, information acquired from applying data analytics to community health data can be used as a tool to improve the public health of the community so long as the information does not cause individual harm and maintains patient confidentiality.
The stewardship framework for the utilization of community health data includes data quality, openness, purpose specification, individual participation, de-identified data, security, and accountability.1 Data quality ensures that up to date data is used for relevant studies. Openness allows for transparency regarding the acquisition of data, what it will be used for, and the people involved with handling the data. With this information out in the open, the purpose specification is clear and individuals are informed that their data is being put to good use. With information openness and purpose specification, individuals still maintain autonomy over their data and have the right to individual participation in which they know if their data is being used, can receive a copy of their data, and make challenges to protect their data. This is especially important if patient data in a community study could identify a patient, the data must be de-identified to protect patient privacy and confidentiality. There must be other safeguards to protect patient privacy and confidentiality, the role of security is to ensure that data is not accessed or modified without authorization. Finally, accountability entails that HIM professionals and others with access to patient data act with governance and oversight such that the aforementioned principles can be achieved.2
Ethical stewardship is established by information governance. Information governance establishes the rules and responsibilities that form the framework of ethical information stewardship and is always changing due to the complexity of electronic health information.1 It is important to note that information governance is different than data governance. While data governance (DG) deals with pre-analyzed data models integrity and security, information governance (IG) also includes some aspect of DG as it encompasses multiple aspects of information acquired from data analytics throughout its life cycle. In fact, information governance is so wide ranging in that it also includes information technology governance, records and content management, risk management and litigation readiness, and business intelligence regarding all types of information from all types of data spanning from all types of healthcare organizations.3 It is important that IG covers such a wide range such that it is clear what is ethical or not regarding information is acquired and what is done with it.
References
- Harman LB, Cornelius FH. Ethical Health Informatics: Challenges and Opportunities. Burlington: Jones et Bartlett Learning; 2017.
- Bloomrosen M, Detmer D. Advancing the Framework: Use of Health Data–A Report of a Working Conference of the American Medical Informatics Association. Journal of the American Medical Informatics Association. 2008;15(6):715-722. doi:10.1197/jamia.m2905.
- Fenton SH, Low S, Abrams KJ, Butler-Henderson K. Health Information Management: Changing with Time. Yearb Med Inform. 2017;26(1):72–77. doi:10.15265/IY-2017-021
Discussion 2:
In our studies about ethical procedures and policies in healthcare, it is important that we identify one of the most important concepts, stewardship. This concept outlines the how general healthcare information will be handled in a way that is responsible and does not breach any ethical or privacy standards. The stewardship framework presented in Chapter 15 of Ethical Challenges provides a guide showing how members of varying community sizes can provide stewardship to those around them, by sharing information that they may find useful1. The framework starts with the ideas of accountability, openness, transparency, and choice. These concepts convey that a provider is caring, responsible, trustworthy, and overall display the bioethical principle respect for autonomy, the central concept of ethics in healthcare1. This is why, in stewardship, these are important to teach and nourish first. An example of these concepts can be seen in a Canadian prescriber driven campaign on the affects of antibiotic overuse. Providing openness in the form of information on antibiotic overuse and how it could result in treatment resistant bacterial infections, the study displays how stewardship in the community is important for increasing the well being of everyone involved2. Community/individual engagement/participation is another part of the framework. It means that a person (or community for this matter) should have control over their information, and a provider is responsible for letting them do so, but in a manner that is reasonable. Purpose specification, quality, and integrity are also important because they outline how community health data should be used. Meaning, the collection of data from an individual or community should be specified and relate to the reason they are being used, to properly convey the intentions of the caregiver and minimize misuse or any possible ethical policy violation. Providing transparency in these ways might not be enough to protect data. So, stewardship also requires data security and de-identified data information also be known. This is as simple as using authentication when accessing records or removing PI from a form that may not require it.
Another important part of stewardship is information governance, which sets the standards for the former. As defined by The Journal of Paramedical Sciences, information governance is used to increase the efficacy of operations through creating a framework with ethical consideration to guide the use of information3. Its implementation has been seen clinically to improve the handling of information and customer relations while also minimizing costs3. They are the detailed rules, standards, regulations, and etc. within the stewardship framework, as I have discussed above. The claim by the journal’s publication makes sense, in that using stewardship will only spread the practice of proper information use, which will minimize cost spent in fixing information mishandling while improving customer relations.
- Laurinda Beebe Harman and Frances Cornelius. Ethical challenges in the management of health information, 3rd edition. Burlington, MA: Jones & Bartlett Learning. 2017.
- Leis JA, Born KB, Ostrow O, Moser A, Grill A. Prescriber-led practice changes that can bolster antimicrobial stewardship in community health care settings. Can Commun Dis Rep. 2020;46(1):1–5. Published 2020 Jan 2. doi:10.14745/ccdr.v46i01a01
- Rouzbahani, F., Rabiei, R., & Asadi, F. (2019). Information Governance Program: A Review of Applications in Healthcare. Journal of Paramedical Sciences. doi: 10.22037/jps.v10i1.23597
Discussion 3:
Our book uses the following quote to introduce health stewardship, defining it as: “a responsibility, guided by principles and practices to ensure the knowledge and appropriate use of data derived from individuals’ personal health information†(National Committee on Vital and Health Statistics, 2009, p.4). Data stewardship is the bridge between an organizations data, and the organization’s needs and processes that require it. Good data stewardship ensures the data is accurate, available, and secure2. In regard to healthcare the stewardship framework is made up of several fair information practices, most prevalent are the Health Information Portability and Accountability Act (HIPPA) and the Health Information Technology for Electronic and Clinical Health Act (HITECH).
In 2007 The National Committee on Vital and Health Statistics released a report titled “Enhancing Protections for Uses of Health Data: A Stewardship Framework†advising the Secretary of Health and Human Services on the proper data Stewardship in regard to healthcare data2. The full report can be found here: https://ncvhs.hhs.gov/wp-content/uploads/2014/05/080424rpt.pdf (Links to an external site.). In the NCVHS’s report, proper information governance is outlined. “Information Governance (IG) is a strategic approach to maximizing the value while mitigating the risks associated with creating, using, and sharing enterprise information†1. Proper ethical stewardship is achieved when an organization has taken every action necessary to ensure that the data it is leveraging is beneficial and relevant to the community, as well as protected and safeguarded using the proper security controls and authentication. One example of protecting this data derives from whether the data is physical of digital. Both forms of data have their own unique requirements to security whether it is a physical wall or a firewall.
References
AHIMA. “Information Governance FAQs.†Information Governance FAQs, 2019, www.ahima.org/topics/infogovernance/faqs?tabid=faq (Links to an external site.)
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES. Enhancing Protections for Uses of Health Data: A Stewardship Framework. NCVHS, 2008, ncvhs.hhs.gov/wp-content/uploads/2014/05/080424rpt.pdf
Discussion 4:
- Identify and detail the stewardship framework for the use of community health data.
Data stewardship is a concept with deep roots in the science and practice of data collection, sharing, and analysis. Reflecting the values of fair information practice, data stewardship denotes an approach to the management of data, particularly data that can identify individuals [1]. Stewardship framework identifies how to collect, manage, use, protect and share data responsibly. As demonstrated by National Committee on Vital and Health Statistics (NCVHS), principals of a useful framework for community health data involve [2]:
- Accountability: It requires identification of the person or entity responsible for stewardship at each point in the life cycle of data, from initial collection and use, wherever it is safeguarded, and following through to dissemination of results and, if appropriate, the safe archiving or disposition of raw data.
- Openness, Transparency and Choice: In practice, when individuals know what information is being collected and why, they know what to expect, have an opportunity to ask questions, understand the goal of data collection and use, and are more comfortable participating in these endeavors. The same is true of communities as a group. Openness and transparency promote trust. For example, a study shows that individuals almost always will consent to research if asked, but they still want to be asked [3].
- Community and Individual Engagement articulates the need to consider whether and how it is appropriate to involve communities in decision making about data collection and use.
- Purpose Specification indicates that data stewards consider the purpose of data collection and the future use of data collected at the outset of a project’s design, and they make both initial purpose and anticipated uses explicit.
- Quality and Integrity: Data management should ensure that data are as accurate, complete, and up-to-date as needed for the intended use. Data integrity may be accomplished by carefully defining data requirements, understanding data sources, accessing trusted sources, and using verifiable practices for data collection, among other methods.
- Security: Data stewards should ensure the security of their data, including availability for their intended use, their integrity, and, when appropriate, their confidentiality. Responsible data security starts with an evaluation of risks that can be anticipated and a plan to mitigate those risks. Mitigation techniques include physical, administrative, and technical safeguards to ensure the integrity, availability, and, where appropriate, the confidentiality of data.
- Protecting De-identified Data: De-identified data may, in fact, be re-identified intentionally or unintentionally, especially when data are combined from multiple sources or derived from small subpopulations. Communities may wish to analyze their data at levels as local as census tracts, enabling inferences to be drawn about small groups.
- Stigma and discrimination: Community health data stewards should be alert to data uses that might result in discrimination against the community or its members. An example would be the possibility of redlining in the housing loan market if there is robust data about poor health status for a particular community.
Reference:
[1] Rosenbaum S. Data governance and stewardship: designing data stewardship entities and advancing data access. Health Serv Res. 2010;45(5 Pt 2):1442–1455. doi:10.1111/j.1475-6773.2010.01140.x
[2] Green L.National Committee on Vital and Health Statistics. 2012. Letter to Kathleen Sebelius, Secretary, DHHS. A stewardship framework for the use of community health data. 5 December
[3] Ludman, E.J. et al., “Glad you asked: participants’ opinions of re-consent for dbGap data submission,†J. Empir. Res. Hum. Res. Ethics. 2010 Sep 5(3):9-16.
- Discuss the role of information governance in relation to ethical stewardship.
Generally speaking, data governance in healthcare is important, because it is vital for caregivers and leadership to have access to the right information at the right time and in the right format so that proper clinical and business decisions can be made. As discussed by Rosenbaum, data governance is the process by which responsibilities of stewardship are conceptualized and performed, that is, the policies and methodologies that enable stewardship. Data governance forms the broad policies for access, management, and permissible uses of data; identifies the methods and procedures necessary to the stewardship process; and establishes the qualifications of those who would use the data and the conditions under which data access can be granted [1].
[1] Rosenbaum S. Data governance and stewardship: designing data stewardship entities and advancing data access. Health Serv Res. 2010;45(5 Pt 2):1442–1455. doi:10.1111/j.1475-6773.2010.01140.x
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