Cancer Patients Accessing their Online Medical Records
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1 Cancer Patients Accessing their Online Medical Records Hanife Rexhepi Informatics Research Centre, University of Skövde, Sweden
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3 Agenda Deployment of Online Medical records and E- health services (DOME) Interview study with cancer patients Questions
4 Deployment of Online Medical records and E-health services (DOME) Idea autumn 2011 Start june 2012 Goal To build and disseminate knowledge about the implementation and use of medical records online and other ehealth services and is based on studies of e-health projects Uppsala university University of Skövde Lunds university Action research SUSTAINS National implementation Vinnova, Sweden s innovation Agency, Uppsala Universitet and 30co-financiers
5 A Multidisciplinary Research Project Senior researchers from different areas Information Management Qualitative and Quantitative Information technology Human Computer Interaction Medicine IT and work environment Management studies Business studies Healthcare Informatics Information Security Organization theory Engineering Education Medical informatics
6 Research in three different areas A. Patients and Relatives B. Professionals and Management C. Development and Deployment
7 Studies in WPA - Patients and Relatives 1. Survey - patients requesting their paper-based Medical Records 2. Survey - patients who have experience of accessing their Online Medical Records - pilot project 3. Interview study - patients from department of Oncology 4. Interview and observation study of patients understanding when reading their Online Medical Records 5. Follow-up survey to patients who read their paperbased Medical Records 6. Survey and interview study with patients accessing their Online Medical Records
8 Studies in WPA - Patients and Relatives Resistance and fear Seriously ill patients access Autumn of 2012, County Council of Uppsala (LUL) gave all patients over 18 years of age access to their EMR appointment bookings medical notes drug prescriptions medical lab results diagnoses referrals access log Women s Protection Unit Psychiatry
9 Interview study Please note: All images are from clip art and have nothing to do with the study patients Ethical vetting/ assessment of the research Voluntary participation Cooperation with the department of oncology - information sheet Semi-structured interviews (45-60 min) Transcribed Thematic analysis
10 Cancer Patients Accessing their Online Medical Records
11 Why cancer patients are reading their medical record online? Curious Increased understanding Control (well being) Access test results - Reduce anxiety Have I understood the information correct Suspects inaccuracies
12 The importance of accessing Online Medical Records Preparation improved communication & increased participation Memory support Reduced waiting times Access to information when and where it is needed Safety
13 The importance of accessing Online Medical Records Can create a feeling of safety Accessing test results, it is a tremendous difference, it really means a lot to me. To get the information at once so you do not have to wait. It's so difficult to wait, whether it is bad or good news, it's very good to know
14 What is your opinion on accessing information that may be worrying? 14 of 15 patients want to access all type of information, including worrying information
15 Access to worrying information If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it
16 Access to worrying information I'd rather sit and cry at home and fix myself in the head so I can get back on track, rather than sitting in front of a doctor, chocked without the ability to ask questions
17 Effects on healthcare practitioner-patient relationship? The majority experience improved relationship: The opportunity to prepare for the meeting -> improved communication and increased feeling of safety and empowerment
18 Cancer Patients Accessing their Online Medical Records - Overview All patients perceive that they understand the contents in the EMR even if they do not understand specific medical words The majority of patients have not been upset by reading the EMR Six of fifteen patients have found inaccuracies in the EMR No one has made a request for an correction do not want to bother sees it as an opportunity to correct errors
19 Cancer Patients Accessing their Online Medical Records - Overview All patients want to read unsigned medical notes They are positive about the possibility of sharing information with relatives only one patient has shared the information The patients trust that the service maintains a high level of security
20 In conclusion. Patients are positive to Online Medical Records Allowing full access to medical records increased satisfaction without much effect on anxiety Providing access to medical records seems to reduces emotional distress and enhance ability to: understand the own medical condition and to follow the own care process
21 Cancer Patients who have not read their Online Medical Records
22 What is your opinion on taking part of worrying information? A majority of the patients want to take part of information, even if it is worrying/disturbing I want to know and understand everything The news are disturbing no matter how you get them
23 Questions? Hanife Rexhepi PhD student in healthcare informatics Informatics Research Centre, University of Skövde, Sweden
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