How to Encourage Patients to Donate Data
Becoming a hero with blood or organ donation sounds familiar? What about becoming a hero with data donation? Is donating medical data or records as easy as donating blood or does it cause unusual inconveniences?
With advances in technology such as wearable health devices or electronic health records, in theory, it is quite easy to donate medical data for research or commercial purposes, while in practice, there are some matters such as confidentiality and privacy, which make the procedure of donating medical data harder and more complex.
Since nowadays medical research has become more dependent on big data, it relies mostly on data donated by patients. Research, clinical trials, preventive treatments, and therapies are often developed and improved by means of data, therefore data donation matters! However, data donation is affected by some factors. Patients decide on donating their data after taking risks and benefits into account. So far, research studies have shown that individuals agree to donate their medical data mostly because of three motivations [1, 2] such as:
- Altruism inspires patients to help to reduce suffering of future patients. The hope that by sharing their data to advance research would help in the development of either novel therapies or improvement of current therapy standards.
- Self-Benefit makes patients hope that scientific researchers will discover new, or an improved treatment and they will have a chance to recover by means of this novel treatment. Therefore, motivation can be associated with the self-benefit of patients.
- Public Good: motivates patients to contribute to the research for betterment of public health. By donating their data or samples, patients help doctors and researchers to advance research. Thus, paving new ways for innovative treatments, therapies, or postulate new scientific hypothesis.
However, when it comes to donating medical data, things get more complicated than blood donation. Although these factors explained above encourage patients to donate their data, there are some factors affecting decisions of patients on medical data donation. Previous studies have identified these factors which are elaborated below[1, 2, 3, 4].
- Trustworthiness and familiarity of the organization: When individuals decide on donating medical data, they first want to ensure that this donation will be used appropriately, whether for research or commercial use. However, due to unclear information, individuals donating their data for research purposes might have concerns that their data will be sold to a commercial company. Due to such cases, people rely more on the organization which provides the clearest information about data usage, to donate their data. As shown in previous studies, individuals were willing to donate their data with academic researchers, rather than commercial laboratories due to more trust in research institutes in terms of confidentiality and privacy of the medical data.
- Unconsented access to data: Like trustworthiness, people are also concerned about who will have access to their medical data. The fact that people give permission to keep, access and use their medical data to an organization does not mean they give this permission to any further organization of the same or different kind. Sharing data without consent to a third-party organization, violates the right to keep medical data confidential.
- Confidentiality matters: When it comes to medical data, people are more careful in keeping their data confidential, compared to any other data such as data shared on social media. Although data protection regulations ensure confidentiality, repeated breaches and violations of these regulations have significantly undermined public trust regarding confidentiality. For example, in the USA, over tens of millions of Americans were affected by cyberattacks and health data breaches- just in the first half of 2023. In USA medical data donation is protected through privacy regulations only, without taking consent-based donation system in account [5].
These are some of the main factors that prevent patients from donating their medical data. Patients in general feel more secure in data donation, when data collected is based on measures that ensure ownership of medical data belongs to the patient and confidentiality and privacy of the data are maintained. Different methods are already used in medical research to comply with the needs of patients. The most common methods to ensure confidentiality of medical data and ownership of medical data include different consent models and anonymization.
How to Encourage Patients to Donate Data 2
Becoming a hero with blood or organ donation sounds familiar? What about becoming a hero with data donation? Is donating medical data or records as easy as donating blood or does it cause unusual inconveniences?
With advances in technology such as wearable health devices or electronic health records, in theory, it is quite easy to donate medical data for research or commercial purposes, while in practice, there are some matters such as confidentiality and privacy, which make the procedure of donating medical data harder and more complex.
Since nowadays medical research has become more dependent on big data, it relies mostly on data donated by patients. Research, clinical trials, preventive treatments, and therapies are often developed and improved by means of data, therefore data donation matters! However, data donation is affected by some factors. Patients decide on donating their data after taking risks and benefits into account. So far, research studies have shown that individuals agree to donate their medical data mostly because of three motivations [1, 2] such as:
- Altruism inspires patients to help to reduce suffering of future patients. The hope that by sharing their data to advance research would help in the development of either novel therapies or improvement of current therapy standards.
- Self-Benefit makes patients hope that scientific researchers will discover new, or an improved treatment and they will have a chance to recover by means of this novel treatment. Therefore, motivation can be associated with the self-benefit of patients.
- Public Good: motivates patients to contribute to the research for betterment of public health. By donating their data or samples, patients help doctors and researchers to advance research. Thus, paving new ways for innovative treatments, therapies, or postulate new scientific hypothesis.
However, when it comes to donating medical data, things get more complicated than blood donation. Although these factors explained above encourage patients to donate their data, there are some factors affecting decisions of patients on medical data donation. Previous studies have identified these factors which are elaborated below[1, 2, 3, 4].
- Trustworthiness and familiarity of the organization: When individuals decide on donating medical data, they first want to ensure that this donation will be used appropriately, whether for research or commercial use. However, due to unclear information, individuals donating their data for research purposes might have concerns that their data will be sold to a commercial company. Due to such cases, people rely more on the organization which provides the clearest information about data usage, to donate their data. As shown in previous studies, individuals were willing to donate their data with academic researchers, rather than commercial laboratories due to more trust in research institutes in terms of confidentiality and privacy of the medical data.
- Unconsented access to data: Like trustworthiness, people are also concerned about who will have access to their medical data. The fact that people give permission to keep, access and use their medical data to an organization does not mean they give this permission to any further organization of the same or different kind. Sharing data without consent to a third-party organization, violates the right to keep medical data confidential.
- Confidentiality matters: When it comes to medical data, people are more careful in keeping their data confidential, compared to any other data such as data shared on social media. Although data protection regulations ensure confidentiality, repeated breaches and violations of these regulations have significantly undermined public trust regarding confidentiality. For example, in the USA, over tens of millions of Americans were affected by cyberattacks and health data breaches- just in the first half of 2023. In USA medical data donation is protected through privacy regulations only, without taking consent-based donation system in account [5].
These are some of the main factors that prevent patients from donating their medical data. Patients in general feel more secure in data donation, when data collected is based on measures that ensure ownership of medical data belongs to the patient and confidentiality and privacy of the data are maintained. Different methods are already used in medical research to comply with the needs of patients. The most common methods to ensure confidentiality of medical data and ownership of medical data include different consent models and anonymization.
PAICON
June 27, 2024
7 min read
