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Background and Introduction
Governance is an interactive act that responds to public needs, solves social problems, creates social opportunities, it is also an activity to develops principles for achieving its objectives (Kooiman & Bavinck, 2013). Information governance is a super-discipline that is part of corporate governance content and is a policy-based management information activity that includes the sum of access, maintenance, protection, sharing, storage, and use of information, as well as improvements and protection of information quality. Its purpose is to reduce costs and risks and legally manage the overall information of the organisation (ARMA2012；Laura2010). With the progress and development of the times, information development in the 21st century is particularly rapid. With the impact of the era of big data on human life, information governance has become an essential research today. For big data supporters, the more data, the better, but according to Pakned (2012), the information stored in most companies is unnecessary, they not only increase costs but also increase risk. About 69% of the company’s information has no commercial, legal or regulatory value. If companies can handle those unnecessary data, it can not only accurately locate the information of commercial value to bring profits to the company’s shareholders, but also avoid additional costs in legal and regulatory response.
The continuous development of information governance helps information screening and gets rid of unnecessary information, reserving the right information and making the right decisions at the right time. Information governance not only reduces the cost and pain of discovery but also simplifies the task of discovering and generating responsive information. It also helps knowledge workers to distinguish between valuable information and useless information. The opportunities of information governance help organisations focus on valuable information, improving information transfer to increase productivity, and preventing the potential risk of information leakage (Barclay,2009). Efficient use of information resources for companies to derive business value from them is the opportunity information governance seeks to address. Information governance not only brings opportunities but also seeks to solve problems，such as information security, privacy protection and other issues. For example, BBC News (2013) reported that Edward Snowden, a former US National Security Agency contractor, leaked confidential information and revealed extensive monitoring of the Internet and telephone by US intelligence agencies.
Information governance aims to reduce or avoid the possibility of such incidents recurring.
Governability defined as the sum of social entity governance, which changes with the internal and external challenges of governance and changes in governance acts, this shows that uncertainty is part of the governability (Chuenpagdee and Jentoft, 2009).
The higher the information governability is, the stronger its controllability will be, and the weaker its uncertainty will be. To the temptation of money or other reasons, some peer competition may use unfair means, such as stealing competitors’ trade secrets. Strong information governability can control information access, sharing, storage and other information act to protect confidential information assets and privacy from theft and disclosure. It is using the specific case analysis of care data, studied in four steps to identify the problem and usefulness in information governance, then giving the improvement suggestions in information governance. These are the research priorities of this report.
Identifying problem wickedness
Through the case of care data, the first step is to identify the problem in the case and confirm its nature, severity, and measures. By analysing the case, problems mainly divided into three categories, the first is management and communication problems, the second is anonymous data problems, and the third is Laws and regulations improvement problem. Detailed problem analysis will considere from three perspectives: governing system, governing interactions and system-to-be governed.
From governance system aspect, care data service aims to analyse and use patient records to understand and improve health care services, it also provides medical research by centrally storing patient data information. The Health and Social Care Act was reported in 2012 as a starting point for legal regulation to help launch the care data project. (NHS England, 2014; Nuffield Council on Bioethics, 2015) It finds that the purpose of care data is benefit for the public, but obviously, this project lack of regulation and governance of data sharing agreements. From the perspective of stakeholders, the care data project will use the latest healthcare and technology for the government. The primary legal systems involved are Data Protection in 1998 and Health and Social Care Act in 2012, NHS England and medical researchers believe that the care data project is beneficial to the public, but medical researchers and GP professional associations also believe that the care data project is altruism in use of health data. For medConfidential, they support the care data project but keep questioning the attitude of the possibility of data anonymisation, the criteria for patient consent and opt-out, and patient privacy issues.
From governing interactions aspect, due to the obligations of providing data in the 2012 Health and Social Care Act and the obligation of notifying patients of the option to opt out based on the Data Protection Act, the two obligations conflict with each other. It not only causes GPs face a huge workload but also causes them face with tremendous pressure from these conflicting legal responsibilities. The GP lacks sufficient resources support when communicating with the public, NHS England lacks appropriate awareness campaign for the public, and the care data project lacks rigorous legal support, which has led to the conflict among GPs, NHS England and the general public and the stagnation of the care data project. General Practice Extraction Service(GPES) IT system is used to extract GP records by HSCIC(2013), the HSCIC report shows that pharmaceutical companies and insurance companies have been purchasing patient information for many years, and it also indicates that the risk of the patient’s information being maliciously re-identified is possible (Health and Social Care Information Centre,2014).
From the system-to-be governed aspect, the management and communication approach in the implementation of the care data project lacks the criteria for patient consent or opt-out when obtaining patient data. When adopting the method of data anonymisation, the feasibility in the technical field and the risk response measures of information re-identified were ignored. In addition, there is neither completing legal regulations and enough technical support to prevent commercial companies from purchasing health data, nor corresponding regulatory agency to supervise the safe and rational use of patient data. Data replication and sharing protocols problem, coupled with conflicts of law and GPs’ boycott, as well as confidentiality and security issues for commercial use and public health use, have caused patient distrust of the care data project.
Examining system properties
Examining system properties includes diversity, complexity, dynamics and scale. From the system-to -be governed aspect, diversity analysis considered from technical and social in this case. Overestimated technical expectations are one of the reasons for the stagnation of the care data project. At the technical level, data is rarely fully anonymised in the current situation, and some of the research data needs to be re-identified in medical research, so the care data project lacks strong technical support in terms of information security and privacy protection. Storing all data into a single national database also highly increases the risk. At the social level, there are many problems to be governed, such as how to communicate and publicise the care data plan to the public in an appropriate manner, and the project should confirm the scope that the public needs to know of the project. The situation is that most of the public did not know the plan of centralise GP records in the beginning, and the government did not inform or ask the public of the intention of the project.
The unprepared GPs were suddenly asked to inform the public about the patient data plan, triggering communication pressure between GPs and patients, and resistance of medical data extraction from GPs. The GPs refutes the government’s statement that GPs are obliged to inform patients to extract patient data and they express that they do not have enough funding and time to do it (Pulse Today,2013).To ensure the standard of patients’ opting in or opting out is not and solve the problem of public trust crisis is necessary.
For complexity, technical components focus on data anonymization and pseudonymisation issues, how to maximise the use of anonymous and pseudonym to reduce the risk of data being re-identified. The Social components focus on solving the conflicts between the project involved people such as GPs, the public and the NHS. Gaining a multi-faceted understanding can help the care data project to proceed successfully in the current environment. For dynamics, it is necessary to address the legal and ethical issues for GPs between extracting data and protecting patient privacy, and to give better support, including time, funding and other resources. In terms of commercial involvement, it is necessary to understand more about the public’s concerns and acceptability, as well as more stringent supervision and qualification requirements should develop. For scale, care data project’s scale is the United Kingdom, the physical boundaries are national. In conceptual boundaries, NHS has large-scale vision for care data, but the problems they meet are existing in other countries who are trying to centralize medical data for cost-benefit.
From governing system aspect, for diversity, there are so many groups and committees which involves NHS England, HSCIC, the GPES, Independent Advisory Group, GPs, care data Programme Board, National Data Guardian and Governance Oversight Panel etc. are related to the care data project. For complexity, on the legal level, there is a contradiction between the two laws on the extraction of patient data in the care data project. For dynamics, the care data project’s management system lacks the ability of data security and lacks resilience in responding to different needs. Lack of communication skills causes current care data project is not enough to convince the public to support it. For scale, the large project of care data faces delaying problem, there is no solution currently, and there is no period setting to solve the existing problems.
Step 3 Evaluating the governing system
To evaluate the governing system, understand design features and evaluation criteria are necessary. Considering the element of governance, care data is a large-scale project that reflects the value of personal data, at the same time, this project relies on strong technical support, especially in the information chain. The balance between ethical principles and privacy rights is also an aspect of the element of governance to consider in design features, but this aspect is lacking enough thinking. The instruments here is relevant law such as Data Protection, Health and Social Care Data mentioned before. Other instruments like “The Big Opt-Out”, NHS England communications campaign, medConfidential campaign, publicity campaign, these public information campaign frequently occurred. In terms of action, in order to implement legal responsibility, the Care Data project established HSCIC (Health and Social Care Information Centre) to collect and save analysis of national and personal data with the General Practice Extraction Service (GPES) instead of the work of the former NHS Information Center. Project operations attention includes the rules for patients to choose opt-out, the agreement for patients to agree to join the project, the scope of data acquisition, the protocol for sharing data, etc., this helps to regulate the management of the project.
In terms of modes of governance, since HSCIC mainly controls centralised data, the risk is concentrated in HSCIC. The top-down management model of NHS England lacks bottom-up communication in legal guidance, while GPs who based on professional knowledge and professional ethics lacks guidance when facing of legal implementation, so NHS has the responsibility to strengthen management in this area. In terms of Co-governance, the participants involved in the care data project include patients, GPs, and public-private partnerships, as well as all systems that need be used, etc. The management among them requires clear boundaries and content so that legally restrict and protect participants by signing the contract. In terms of orders of governance, care data advisory group responsible for solving project-related problems, HSCIC obtains GP records through GPES every month, this plan should get the consent of GP and patients. Understanding the data sharing protocols may help patients, and GPs better understand the care data project. In institutional issues of policy part, legal conflicts in data processing need to be solved as soon as possible to integrate it into HSCIC organisational policies to achieve mutual unity of law.
At the level of evaluation criteria, firstly, the governance of different factors does not have good coordination fit in the care data project, especially in terms of laws and regulations. And secondly, the institutions and laws established to maintain the principle of fairness lack fit cooperation. There is also a lack of fit when designing the form between the public image and the governing actions. Criteria evaluate in the mode of governing, the current public concerns and GPs concerns are responded by care data advisory group and The Independent Information Governance Oversight Panel (IIGOP). To evaluate criteria of orders of governance ，regarding whether the management of the specific level and cross-level is effective, consistent and transparent, there is still no evidence to show that, and there is lack of supervision and governance.
Step 4 Governing interactions analysis
Governing interactions analysis has two parts, one states governing interactions, the other is enabling and restrictive role of power. In the case of care data, from the state governing interactions analysis, from the law to the actual implementation, the government to the parliament, the parliament to the law, the legal system to the NHS, NHS to GPs and patients are all unidirectional interactions, the bidirectional interaction exists only between GPs and patients and between GPs and media. Lack of two-way communication in governance, it impacts project development to a large degree. The mode in state governing interactions, most of the interactions have a formal intervention, for example, NHS sends letters to ask GPs to inform patients about opting out, NHS sends out leaflets to promote care data activities to the public. GPs learn from NHS by letter or website. Face to face talking between GPs and patients helps them exchange information. However, according to these statuses, it is obviously showing that these interactions are mostly one-way, which makes it difficult to continue when encountering problems in actual implementation. Lacking two-way communication in interaction and supervision and governance of participants reveals that the governability of the care data project is insufficient.
Considering enabling and restrictive role of power in care data case, the government’s restrictive causes they ignore the public and GPs’ wish. The restrictive power from NHS to the public and GPs causes the resistance from the public and GPs because of NHS control without any participation of GPs and the public. Enabling power among government, parliamentarians and NHS do not make it better when making the law to develop care data project. And enabling between GPs and patients, no matter delegated or partnership, do not help care data project implement, in fact, it only gets a growing public revolt (UK Parliament,2014). More types of interactions to develop two-way communication may help problems solving such as growing public revolt, contradictory legal provisions, worry about privacy protection.
In brief, in this case, firstly, it is identified three major problems are management and communication issues, data anonymisation issues and conflicts of laws and regulations issues and analyse the “wicked” level of these three issues. Secondly, examining system properties, identify relevant system, ensure features and properties of these systems. Thirdly, evaluating the governing system by identifying current governing system, and responsiveness of current modes of governance. Finally, analysing governing interactions by ensuring current state of interactions from purpose, mode, and quality aspects. Analysing the enabling and restrictive role of power can help to understand the problems of interaction. If information governance can strengthen in this case, the three main problems that cause the care data project to stagnate will be largely solved. Strengthening information governance can reduce the risk of data anonymisation being re-identified so that to achieve privacy protection. Once this issue can be solved, to a large extent, public concerns about privacy protection and GPs concerns about protecting patient privacy as well as privacy experts’ concerns will no longer exist. If information governance is strengthened and the employment of professionally qualified information administrators were hired, it can facilitate the supervision and governance of HSCIC through the supervision of data sharing, storage, analysis, etc. It is also available to check whether HSCIC protects data so that to achieve expectations and eliminate the possibility of HSCIC gains profit from selling of patient data. Strengthened information governance can make the public feel more secure about the care data project.
In addition to strengthening the information governance, in other aspects of governability such as communication and publicity, and laws and regulations also can strength. For instance, to adopt the IIGOP recommendations and to find the most appropriate publicity methods to let the public understand the care data project. Care data advisory group as a representative of the government on the care data project can answer questions for the public, if this ‘bridge’ can better convey the ideas between them, it will be more conducive to push the advancement of the care data project. Revise the contradictions in the law, determine the laws and regulations on sharing medical data, ensure that new laws and regulations can strike a balance between protecting the privacy and using data based on actual conditions and problems. Strong, credible and ethical laws and regulations can be strong support for the care data program. It seems that information governance can not only help solve communication and data processing problems but also help to use the information to create value and profit.
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