Public Perception of Health Data Platforms
From Digital Culture & Society
[edit] Context Statement
The most important public health platforms are essentially invisible to the eyes of the public. The only time they are confronted with these platforms is during times of distress like an illness, surgery, or an insurance claim. These platforms can rarely be accessed by members of the public but have become essential to healthcare systems around the world. Their users are healthcare professionals, researchers and organizations and their data is electronic health records. Patient diagnoses, checkups, chronic illnesses, conditions, deformities, prescriptions, and mental health are all electronic health records and exist on health platforms for health professionals to access. Their nature as a platform is hidden behind obscurity and the fact that health data is sensitive and confidential. However, as platforms rise in popularity in the media and regulation comes into effect, healthcare professionals, researchers, organizations, and platforms must confront the rising public suspicion towards platforms.
[edit] Consumer Perceptions of Electronic Health Information Exchange.
Ancker, J. S., Edwards, A. M., Miller, M. C., & Kaushal, R. (2012). Consumer Perceptions of Electronic Health Information Exchange. American Journal of Preventive Medicine, 43(1), 76–80. https://doi.org/10.1016/j.amepre.2012.02.027 https://ocul-bu.primo.exlibrisgroup.com/permalink/01OCUL_BU/hld8s9/cdi_proquest_miscellaneous_1761653802
DOI: 10.1016/j.amepre.2012.02.027
[edit] Context
This study considers consumer perceptions of electronic health exchange. At the time of the article’s release, there were several models of electronic health exchange and only about 9.3% of New York’s population was registered with one of the 12 regional health information organizations. The gauging of consumer perceptions would have helped to consolidate or at least understand what consumers liked best about the different models. This would help in creating a model that consumers and the public can feel at ease with since sharing health information is important to consumer health. By nature of electronic health information collection and sharing, health information must exist on a platform that can be accessed by health professionals and organizations. Understanding user concerns enables these platforms to better protect the rights of patients and consumers.
[edit] Overview
The study seeks to understand the general attitudes of consumers toward the idea of electronic health information exchanges. It is a survey conducted through the Empire State Poll for adult New York residents by Cornell University. The survey contained 77 questions and was conducted through calls. These questions were reviewed to avoid irrelevant questions and ideological questions. Districts with large minority populations were oversampled to ensure minority representation. The survey conducted 1120 calls and 800 people participated creating a sample size with an error margin of 3.5 percentage points.
[edit] Strengths and Weaknesses
The main strength of this study is the questionnaire used to conduct the survey. The questionnaire contained 77 items reviewed and conducted by phone calls to cell phones and landlines. The method of conducting the survey means that interviews added to the sample size were conducted by real people and thus moderated in a way that online or paper questionnaires cannot be. There are a few weaknesses with the survey including the age of the study. It was conducted in 2011 and the public attitude at the time cannot be used in the context of current times. Another limitation is that while the survey asks about sharing information between health information organizations, health research companies and insurance companies, it does not specifically ask about attitudes towards sharing information between health information organizations. The survey is also only statewide and cannot account for broader national attitudes toward the collection and sharing of health information.
[edit] Assessment
This study is great for looking at historical attitudes toward health data collection and sharing in the New York area. It can also be used to discuss the general ambivalence of the public towards models of health information platforms as long as they feel that their privacy is being respected. This study is therefore useful in supporting claims that the public cares more about their privacy than the services being offered.
[edit] Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study.
Papoutsi, C., Reed, J. E., Marston, C., Lewis, R., Majeed, A., & Bell, D. (2015). Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. BMC Medical Informatics and Decision Making, 15(1), 86–86. https://doi.org/10.1186/s12911-015-0202-2 https://ocul-bu.primo.exlibrisgroup.com/permalink/01OCUL_BU/hld8s9/cdi_gale_infotracacademiconefile_A541444554
DOI: 10.1186/s12911-015-0202-2
[edit] Context
This study seeks to understand public perceptions towards an integrated health information system. The idea of a national health information platform that health professionals can access and gain access to every test and diagnosis that a patient has ever had is a dream for healthcare professionals. A system like this would greatly reduce the chances of misdiagnosis and healthcare professionals would be able to be held accountable for misdiagnosis and negligence in care. It also provides a wealth of information for developing healthcare policies and managing public health and welfare. However, installing a system like this requires patients to support the system and voluntary consent to give up that information and let others access it. As such, gauging public sentiment and the sentiments of healthcare professionals is important in developing such a platform.
[edit] Overview
The study is concerned with the concerns and levels of support for electronic health records and the idea of integrating these separate health platforms into a single state-owned platform. The study is conducted through a sequential mixed method. Phase 1 of the study is a physical questionnaire given to members of the public in the waiting rooms of hospitals in West London. The questionnaire contained 33 items including questions about the background of the individual filling the questionnaire. Phase 2 consists of qualitative focus group discussions consisting of groups of patients, health professionals, health researchers and National Health Service managers. Discussions lasted between 60 – 110 minutes and were facilitated by two researchers.
[edit] Strengths and Weaknesses
In this study, because the questionnaire asks questions related to the background of the people filling it, there is a clear chart of how different demographics feel about electronic health records. This allows readers to determine if the sample size of certain demographics is large enough to be a strong argument. It also serves as a mini census of the populations of hospital waiting rooms in the area. Another strength is the sample size of the questionnaire with a size of about 2700 people. The main weakness of this study is that it was conducted in 2011. The healthcare landscape has changed and so has the population and general attitudes of the public towards health care platforms. The limited geography of the sample is another weakness of the study.
[edit] Assessment
This study can be used to examine the general attitudes of different demographics and their focuses when looking at public health organizations and electronic health records in general. The conclusions of the study can be used to display public apprehension towards the security of public health platforms. The study provides a wealth of information from different demographics including quotes about their concerns about their data and health platforms.
[edit] Perceptions of anonymized data use and awareness of the NHS data opt-out amongst patients, carers, and healthcare staff.
Atkin, C., Crosby, B., Dunn, K., Price, G., Marston, E., Crawford, C., O’Hara, M., Morgan, C., Levermore, M., Gallier, S., Modhwadia, S., Attwood, J., Perks, S., Denniston, A. K., Gkoutos, G., Dormer, R., Rosser, A., Ignatowicz, A., Fanning, H., & Sapey, E. (2021). Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff. Research Involvement and Engagement, 7(1), 40–40. https://doi.org/10.1186/s40900-021-00281-2 https://ocul-bu.primo.exlibrisgroup.com/permalink/01OCUL_BU/p5aakr/cdi_doaj_primary_oai_doaj_org_article_ab4290aaba124a14ab3375c81a337385
DOI: 10.1186/s40900-021-00281-2
[edit] Context
Electronic health records are part of the National Health Service in England. This data can be used for secondary purposes in research, policy-making and commercial research. There exists a system called the National Data Opt-Out (NDOO) that allows the public to opt out of their data being used for secondary purposes. If patients have not opted out, it is assumed that they have consented to their data being used for secondary purposes. This is the case despite their records being anonymized and still considered confidential and sensitive. Issues of informed consent are apparent in this system as instead of having to opt in, the patient must opt out instead. This shows that health platforms are not immune to the privacy issues that plague platforms that are public and profit-based.
[edit] Overview
This study tackles questions of whether the public’s support of the NDOO and secondary use would vary by demographic and healthcare experience. It also tackles whether awareness of the NDOO and secondary use are similarly varied. The study consists of three methodologies. The first is a patient workshop that recruited from University Hospitals Birmingham and all participating individuals had to be patients within the last year and part of a patient support group. The second was a public workshop where the only requirement was to not be a patient of the UCB within the last year. Both workshops were open and consisted of 4-hour discussions with themes and action points chosen by participants. The final method was a questionnaire developed by participants of the previous workshops and the host research team, PIONEER. There were 350 participants and participants of the workshops were invited back to participate in feedback sessions where the results of the questionnaire were discussed and principles for data access were suggested.
[edit] Strengths and Weaknesses
The main strength of this study is the combination of discussion workshop formatting and the use of a questionnaire. By involving the public in the research process, the resulting answers and discussions are given by people who are invested in some aspect of the topic. Even when patients and regular people have little knowledge of the subject, their involvement in the process and feedback give the article a lightning focus on the perception of normal people towards NDOO and secondary use. The weakness of the study also lies in its narrow focus geographically in the West Midlands. Another weakness is that by involving participants in the research process, workshop participants are contaminated by the researchers as opposed to questionnaire participants who have little involvement in the research process.
[edit] Assessment
This study can be used to discuss consent in regard to electronic health data and secondary usage of health information. In the study, it could be seen that most participants had no or close to no knowledge of the NDOO and had no idea that they were consenting to anything at all. This study is also useful for examining public attitudes toward who can access their data and how that changes depending on the purposes for which it might be used.
Ba18ec 21:16, 1 December 2023 (UTC)
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