PRIVACY ASPECTS IN HEALTHCARE

Transcription

1 PRIVACY ASPECTS IN HEALTHCARE Rose-Mharie Åhlfleldt, University of Skövde and Karlstad University Bild 1

2 OUTLINE Good quality of care Patient safety and patient privacy Current state of research SUSTAINS DOME Future challenges Bild 2

3 CONSIDER FOLLOWING Assume yourself as a citizen or patient From your own experience, what privacy issues regarding patient information do you consider most important to manage? Explain why? Bild 3

4 SECURITY CHALLENGES IN HEALTHCARE Healthcare information intensive organization Relevant patient information is a necessity for conducting good care. Patient information is sensitive information by the law. Patient information is stored in different places and in a large numbers of databases. How can we know what information is necessary? Information overload - High risk that too much information is stored and managed. Provides problems both for those who need information, but also for the protection of information. Electronic Healthcare Records (EHR) databases are not encrypted. Passwords are still the most common authentication technology Bild 4

5 GOOD QUALITY OF HEALTHCARE Good quality of healthcare should be characterized of patient focus and be equitable and safe. It will be implemented in consultation and with respect for patient autonomy and integrity. A participative patient can more easily promote the aims of care and treatment are achieved, and that security risks can be prevented. This requires that healthcare providers, decision makers and health care professionals administering the legislation, governing the status of the patient and that there is a management system for quality and patient safety that also includes treatment, information, participation and continuity (Socialstyrelsen, 2011). Bild 5

6 PATIENT SAFETY Definition of patient safety according to SFS 2010:659 (Patient safety act) Protection against care injury - the result of actions against risks, incidents and negative events provides protection of care injury Definition of care injury Suffering, bodily or mental injury or illness and death that could have been avoided if adequate actions were taken at the patient's contact with health services An examination of randomly selected medical records showed that there can be up to patients who are injured and 3000 killed every year due to an injury 20 % of the care injuries are IT-related. (Patientsäkerhetsutredningen, SOU 2008:117) Bild 6

7 PATIENT PRIVACY Healthcare will be implemented in consultation and with respect for patient autonomy and integrity. Patient Data Act (SOU 2008:355) Unified record-keeping - multiple healthcare providers can give and get direct access to each other's medical records if they meets the legal requirements. Inner secrecy only those who need the patient information in its work in healthcare may have access to patient information. Imposes requirements on authentication and access control. The patient has the right to block data Caregivers have an opportunity to give the patient direct access, for example via the Internet, care documentation and logs Bild 7

8 INFORMATION SECURITY MODEL Bild 8

9 CURRENT STATE OF RESEARCH ( APPARI AND JOHNSON, 2010) With increasing reliance on web-based systems for managing health information and the deployment of personal health banks, privacy concerns of healthcare consumers have come to the forefront. Recent research in this area has often focused on restricted user bases, such as students. Future research should explore the variance of privacy preferences in the context of online systems among a broader range of users, including the general working population and senior citizens. A deeper understanding of the factors influencing healthcare consumers' willingness to disclose personal information would enable better policy making and enhance the adoption of e-health Bild 9

10 SUSTAINS - Support USers To Access INformation and Services Three-year project aimed at developing and deploying a basket of services in 11 European regions providing patients access to Electronic Health Records (EHR) SUSTAINS aims to measure the impact of a wide range of administrative and clinical services for patients based on patients access to EHR on the three areas Patient empowerment Medical results Efficiency and economy Consortium: 16 partners, 2 from Sweden: Uppsala county (project leader) and Norrbotten county Bild 10

11 Deployment of Online Medical Records and E- Health Services (DOME) A research project run by the PACE- IT consortium

12 Research Groups Uppsala University, Department of business administration Lunds University, Department of design sciences Ture Ålanders GP & med. science at Uppsala University Uppsala University, Department of information technology Uppsala University, Department of ABM University of Skövde, School of humanities and informatics

13 The goal of the DOME project Create and disseminate knowledge about the adoption and use of medical records online and other e-health services aiming at win-win for patients and healthcare Objectives in the initial phase (2012) Scientific studies Development of constellation for cooperation Action research tasks in the SUSTAINS project

14 Methodology Surveys Interviews Participatory observations Action research 14

15 Three workpackages ( ) A. Patients and relatives B. Professionals and Management C. IT Development and Deployment

16 Patients and relatives DOME AWitudes and expectations regarding developed e- health services Effects Impact on patients and relatives information behaviour Impact on security, patient safety and privacy Visualization of information in the patient s interface Availability for everyone? Users with specific requirements

17 DOME Professionals and Management Profession in relation to other professions Profession in relation to patient Profession in relation to organization/management Relations between different care organizations How these factors change over time Which ehealth improvements do professionals desire in the future?

18 DOME IT Development and Deployment Does the ehealth system in focus contribute to lower costs? How to develop a system with focus on the patient, the professionals using the system and their respective needs? What needs of future functionality can be found? What methods can be used to ensure organizational needs as well as innovation?

19 Ongoing studies in work packages WP A Patients and relatives Patient survey (CESÅ) Patient survey (T Ålander s GP) Patient empowerment survey - European Patient Forum Deployment in women s care Literature study WP B Professionals and management Employees at Uppsala CC (T Ålander s GP) Professionals working in healthcare (spring 2013?) Management in healthcare and politicians LUL/Skåne/VGR/ NLL Analysis of media coverage Literature study WP C IT- Development and deployment Evaluation of SUSTAINS development process interviews with involved staff Responsibilities in practice who takes care of the system usability? Economic indicators Towards Action Research in Sustains Literature study

20 CONSIDER AND DISCUSS FROM YOUR PERSPECTIVE AS A PHD STUDENT AND AN EXPERT ON PRIVACY What privacy issues regarding patient information do you consider most important to manage? Explain why? What s differ from your earlier patient view? Bild 20

21 FUTURE CHALLENGES Data Inspection Board s recommendations about privacy by design Minimize the amount of personal data Restrict access to data Protect data Allow the systems to operate users in the right direction How can these recommendations be applied in healthcare? Bild 21