Their words were transcribed, but the general information attributed to them was given. I would also like to thank the participants who participated; the research would not have been possible without their contributions.
INTRODUCTION
Outline of the dissertation
2 Chapter 2: Literature Review. This chapter reviews relevant literature related to the study and will begin by providing an overview of why patient attitudes are important by describing the ethical principles. This chapter begins with the objectives of the study, followed by the research design; sampling technique, instruments used to collect data, procedure followed to collect data, measures taken to ensure reliability, and concludes by outlining ethical considerations applicable to the study.
LITERATURE REVIEW
Introduction
Medical records
- Medical records in research
There is now an increase in the type and amount of information contained in medical records. Therefore, all of this information can be accessed when researchers use patients' medical records in research.
Legislative frameworks
- South African legal system
- United Kingdom legal system
In addition, the act states that anyone who needs to use medical records containing identifiable information for research, teaching and study must obtain authorization from the head of the institution. Furthermore, it allows the use of data without patients' consent in cases where it can be proven that a low response rate would compromise the validity of the research.
Guiding ethical principles
- Principles of the Belmont report
- Moral principles governing research ethics
- South Africa Department of Health Research Ethics Guidelines (2015)
- South African Medical Research Council’s (SAMRC) ethics policy
- Health Professions Council of South Africa (HPCSA) Guidelines (2004)
Informed consent refers to participants' understanding of the important implications of their decisions to participate in the study. Confidentiality on the other hand refers to "the treatment of information that an individual has disclosed in a relationship of trust and with the expectation that it will not be disclosed to others in ways inconsistent with the meaning of the original unauthorized disclosure" (OHRP, 2009).
Factors influencing public attitudes towards usage of medical records for research
- Confidentiality
- Anonymity
- Consent
- Lack of communication and awareness
- Nature of information in the medical records
- Background
- Effects of medical research
- How the study is conducted
The general public is poorly aware of the secondary use of medical records (UK Medical Research Council, 2007). Therefore, there is a need to collect more data on patients' attitudes towards the use of their medical records in research.
Attitudes towards use of medical records for research purposes
- Supportive
- Helpful/Altruistic
- Cautiousness
34 of their medical records were used for research, 70% of respondents felt that the merits of the research outweighed the disadvantages. 2012) findings are consistent with previous research, which focused on the use of medical records for research purposes; arguing that the majority of Irish participants wanted consent to be sought before their identifiable information was used for research purposes. The findings of Robling et al. (2004) indicated that most participants would allow researchers to access their medical records for altruistic purposes, such as when the research could advance treatment to help others with the same illness. Participants in the study by Kass et al (2003) indicated that they only wanted their data to be used if the research would help advance medical knowledge.
35 more reliably allow the use of their data. 2004) point out that respondents need a "firewall" between their health records and researchers. As stated by 6 out of 10 respondents; if independent ethical review boards approved the research to be conducted, they would be more inclined to allow their personal health information to be used. People felt that giving permission or withholding consent could be a precautionary measure, as indicated by the majority of patients who felt that consent should always be obtained before their medical records are used for research purposes.
Summary
Preferences about the possible reasons why doctors might want to take the information and what it might be used for. Approach preferences, number of details to be provided about the research, method of consent,.
RATIONALE
Research problems and objectives
Objectives
Significance of the study
METHODOLOGY
- Introduction
- Aims and objectives
- Research design
- Qualitative Research
- Sampling technique
- Inclusion Criteria
- Recruitment
- Sample
- Demographics
- Data collection techniques or tools
- Focus group
- Semi-structured interviews
- Data collection instruments
- Interview/ Focus group schedule
- Open-ended questions
- Data collection procedures
- Focus Group Discussion Process
- Semi-structured one-on-one interview process
- Ethical considerations
- Autonomy and Informed Consent
- Justice
- Beneficence
- Data Analysis
- Thematic Analysis
- Limitations of thematic analysis
- Trustworthiness
- Credibility and Dependability
- Transferability
- Confirmability
The researcher initially intended to have an even distribution of men and women in the focus group discussions. Initially, the researcher planned to conduct the focus groups in an honors room in the Psychology building. The researcher then decided to conduct the discussions in the waiting room of the clinic because it was more convenient for the participants.
To ensure this, the researcher did not coerce or coerce anyone to be a part of the study. Furthermore, the researcher explained who she was, what the study focused on and what was expected of the participants. The researcher did not use any deception during recruitment or during the study.
FINDINGS AND DISCUSSION
Introduction
Anonymity
This shows that people want their data to be used to increase their knowledge, but do not want the world to know that they are suffering from a particular disease. For me, if I am eligible to be part of your study, you can use my data, but you must ask me”. Although anonymizing medical records has drawbacks, researchers should adhere to the principle of anonymizing the data so that people can feel comfortable using their records for research.
In a survey by Campbell et al. 2007), the majority of patients did not consider the use of personally identifiable information by organizations such as the UK National Cancer Registry, for research and public health surveillance purposes, to be an invasion of privacy. Confidentiality includes the use of anonymous data and also allows identifiable data to be used without consent, provided such use is necessary (Coleman et al., 2003). Anonymization of data absolutely must occur before researchers access the data, but this can reduce the value of research if important data items are removed (Willison, 2005).
Informed Consent
- Trust
- The right to control how medical records are shared and accessed
- Respect
- Cultural Sensitivity
- Age
- Consent preferences
Participants who wanted to be asked for permission simply wanted to be made aware of the type of research for which their data would be used. This is consistent with the findings of Willison et al. (2007), which showed that most participants wanted to be asked before their anonymized data could be used for research. There was no consensus on whether they wanted to be asked for consent or not.
In addition, participants wanted control over their health records because they wanted to change their wishes. Participants in this age group indicated that they were inclined to allow their medical records to be used. As most participants indicated that they wanted to be asked for permission when their health records were used for research, the issue of frequency was also discussed.
Positive aspects of disseminating medical records for research
- Research purposes
- Importance of research
- Altruism
Because, as I said before, this research will become more important the more we informatize this part of the world, and I want to find out why it would matter what the information would be used for. Woolley and Propst (2005) found that the general public was very supportive of health research because they were aware of the benefits. Additionally, Woolley and Propst (2005) found that a majority of the general public in America believed that health research would maintain its global leadership role as a leader in health research.
The public should be made aware of the importance of improvements in health care brought about by research into medical records, so that patients will be more willing to support information-based research conducted under the supervision of REC in the light of patient consent or authorization. The Oxford Dictionary (2010, p. 19) defines altruism as “the principle or practice of selfless concern or devotion to the welfare of others.” UK MRC (2007) participants believed that individual consent was more important than the greater good, regardless of whether the research was important.
Reservations
- Contents of the medical record
- Access to medical records by third parties
- Social Harms
- Misuse of personal health information
- Undue inducement
Several participants illustrated that they were very cautious in using the information due to the level of sensitivity. This may be due to the large number of reported data breaches (Westin, 2010). Participants in the UK MRC (2007) study indicated that commercial organizations did not like having access to their health records because they felt that the information would benefit the organizations rather than the individual.
These harms are not unique to the black participants included in this study; perhaps they were reinforced by the ethnicity of the majority of participants. Mandy*: After all, researchers are human too, they're bound to make mistakes. Some participants indicated that they would only participate because of the perceived good that would come from the studies outweighing the risks of participating in the studies.
Summary
CONCLUSION, LIMITATIONS AND RECOMMENDATIONS
- Key Conclusions
- Proposed Implications
- Limitations
- Recommendations
The results suggest that it would be wrong to conclude that research using medical records is best avoided. Therefore, there is a need to educate the general public about the uses and benefits of research using their health records. Current data suggest that researchers cannot simply assume that people accept the use of their health records with or without explicit consent for a particular study (Willison et al., 2009).
The study of public attitudes towards the use of their medical records for research purposes is still in its infancy in Africa. Using medical records in research: What patients want. informed consent and selection bias in observational studies using medical records: systematic review. Retrieved from http://www.mrc.ac.uk/documents/pdf/the-use-of-personal-health-information- in-medical-research-june-2007/.
INFORMED CONSENT FORM
I understand that the conversation is being recorded so that the researcher can use it for her data analysis, therefore I give the researcher permission to record the conversation. The purpose of the study has been explained to me and I understand what is expected of my participation. I understand that the study findings will be made available to students upon completion of the study.
You may discuss the content of the focus group discussion, but do not reveal anyone's name. Although confidentiality is encouraged, the researcher cannot guarantee that people outside the group will not make disclosures. The researcher will keep all information confidential and no identifiable details will appear in published reports.
FOCUS GROUP SCHEDULE
What concerns, if any, do you have about personal information being used for medical research by medical researchers? Purpose: determine how people think their medical data is used, how it should be used, and whether they are willing under what circumstances to have it used in research.
ETHICS APPROVAL
GATEKEEPERS APPROVAL
THEMATIC MAP
As with the HIV test, if someone doesn't want their records used, that's the only time they can say no. Yes, I think we should be asked because sometimes we may have these genetic diseases that are supposed to be our own, so we should keep them in the family/clan and we may be the only ones who need to know about it. That's why we should be asked first because this disease may be our own and people in the community may even know that they are talking about us in this research because the whole family may have symptoms of the disease.
I will have to sign somewhere because if something goes wrong, the researchers can also have proof that I have consented to my data being used”2. They should at least have some form of consent process, like when you go to your doctor or hospital, they should have a section where they will ask for your consent to use the data.”-2. They should at least ask for permission occasionally. I don't really want to be asked for permission every time, but I should at least agree.
