How Should Patient Clinical Data Be Protected?
Patient confidentiality has stood the test of time for doctors and healthcare providers for thousands of years. This concept of keeping patient information private is vital for three reasons: 1). Builds trust between patients and providers; 2). If privacy is insufficient, patients will avoid care altogether; 3). Patients may withhold information if they fear it will not be kept private. Many patients refuse to be involved in research studies due to fear of information privacy issues (Caine & Tierney, 2014).
Are we able to find a “happy medium” in healthcare between protecting clinical data and using it for patient care and research? This is a tough question that providers are being faced with due to the overload of health information that some providers experience. Some believe that knowing all patient health information is necessary to provide the best care for the patient. Some others believe that doctors and providers are overwhelmed with too much information that may take away from actually caring for and treating the patient and that minimal information should be provided or only what the patient approves.
Through years and years of school, we as providers are taught to gather as much information as possible when confronting a problem or backing our argument. In my opinion, this is why many providers are struggling with this notion of reducing access to patient information. We strive to know every detail about a patient before stepping foot in their room so we have an overall picture of that person’s health condition to provide better care. The idea of restricting access to information, especially by patient control, is a foreign and scary concept to many information driven providers. I work in an acute care hospital where patient medical history details are crucial in patient care. My personal opinion on this matter is that data should be accessible by all healthcare providers to provide overall best patient care. A patient may assume that information regarding their health may not be pertinent to some providers, however, the patient is not always fully informed about the repercussions of not sharing important health data. Restricting data access may actually be dangerous and could cause harm to the patient.
For example, say a patient chooses to restrict access to their medical information from their chiropractor because they do not believe sharing their health data is necessary. What if the patient has diabetes mellitus (DM) type II and the chiropractor is unaware due to limited EHR access? This could hinder the potential for diabetes-focused chiropractic care from the provider. DMII can lead to multiple musculoskeletal effects such as muscle cramps, muscle infarction, loss of deep tendon reflexes, peripheral neuropathy, carpal tunnel syndrome, and many others (Wyatt & Ferrance, 2006). Some of these symptoms can be recognized and managed by a chiropractor. For example, say this patient with DMII is experiencing adhesive capsulitis, or “frozen shoulder”. This is a common symptom that reportedly up to 20% of those with DM experience and causes a reduction in range of motion of the shoulder (Wyatt & Ferrance, 2006). This condition can be managed through stretching and range of motion exercises. If the chiropractor does not know the patient has diabetes, this shoulder stiffness may be slightly overlooked. However, if the chiropractor is aware of the patients DMII condition, then further action may be taken to contact the patient’s primary care physician to let them know about the patient’s symptoms and record this in the patient EHR. Medicine is a team sport where communication and sharing of data information between providers is necessary to provide the best patient care possible.
Currently, one of the largest barriers to research and clinical data integration is data standardization. A strong technological infrastructure that can speak to other data is necessary for communication across healthcare systems. There are already some initiatives in place to address this problem such as the Health Information Technology for Economic and Clinical Health (HITECH) Act which focuses on using health information technology in a meaningful manner. There are also standards in place that define the flow of information between electronic health record (EHR) and clinical research databases and registries (Katzan & Rudick, 2012). In my opinion, I agree with this statement that more data standardization is necessary for use of EHR data in research. More standardization may relieve patients and ensure that their data is strongly protected through these standard practices when transferred from one system to another. The transfer of information is necessary given that people often move through multiple healthcare facilities in their lifetime and fluidity of EHR transfer between facilities is important for excellent patient care.
In my opinion, using patient data for research purposes is necessary to expand our knowledge of disease treatment and prevention. However, standardized informatics frameworks must be developed and closely monitored and secured for the successful utilization of EHR data. These information frameworks exists and are designed to expand access to data within a system and provide an expansion of the system to additional sites. Two current examples of these systems include the Cancer Biomedical Informatics Grid (caBIG) and the Informatics for Integrating Biology and the Bedside (i2b2) (Katzan & Rudick, 2012). These platforms allow for the integration of clinical research and clinical care data by linking data elements that are external to the EHR.
Overall, patient clinical data needs to be well protected via a strong technological infrastructure, however, data should not be restricted from provider access. Access to patient data for providers and research will improve patient care and indirectly benefit patients from research findings. Stronger EHR data fluidity and standardization will instill higher trust from patients, create more capable healthcare teams, and will allow providers to implement the best patient care possible.
Sources:
Are we able to find a “happy medium” in healthcare between protecting clinical data and using it for patient care and research? This is a tough question that providers are being faced with due to the overload of health information that some providers experience. Some believe that knowing all patient health information is necessary to provide the best care for the patient. Some others believe that doctors and providers are overwhelmed with too much information that may take away from actually caring for and treating the patient and that minimal information should be provided or only what the patient approves.
Through years and years of school, we as providers are taught to gather as much information as possible when confronting a problem or backing our argument. In my opinion, this is why many providers are struggling with this notion of reducing access to patient information. We strive to know every detail about a patient before stepping foot in their room so we have an overall picture of that person’s health condition to provide better care. The idea of restricting access to information, especially by patient control, is a foreign and scary concept to many information driven providers. I work in an acute care hospital where patient medical history details are crucial in patient care. My personal opinion on this matter is that data should be accessible by all healthcare providers to provide overall best patient care. A patient may assume that information regarding their health may not be pertinent to some providers, however, the patient is not always fully informed about the repercussions of not sharing important health data. Restricting data access may actually be dangerous and could cause harm to the patient.
For example, say a patient chooses to restrict access to their medical information from their chiropractor because they do not believe sharing their health data is necessary. What if the patient has diabetes mellitus (DM) type II and the chiropractor is unaware due to limited EHR access? This could hinder the potential for diabetes-focused chiropractic care from the provider. DMII can lead to multiple musculoskeletal effects such as muscle cramps, muscle infarction, loss of deep tendon reflexes, peripheral neuropathy, carpal tunnel syndrome, and many others (Wyatt & Ferrance, 2006). Some of these symptoms can be recognized and managed by a chiropractor. For example, say this patient with DMII is experiencing adhesive capsulitis, or “frozen shoulder”. This is a common symptom that reportedly up to 20% of those with DM experience and causes a reduction in range of motion of the shoulder (Wyatt & Ferrance, 2006). This condition can be managed through stretching and range of motion exercises. If the chiropractor does not know the patient has diabetes, this shoulder stiffness may be slightly overlooked. However, if the chiropractor is aware of the patients DMII condition, then further action may be taken to contact the patient’s primary care physician to let them know about the patient’s symptoms and record this in the patient EHR. Medicine is a team sport where communication and sharing of data information between providers is necessary to provide the best patient care possible.
Currently, one of the largest barriers to research and clinical data integration is data standardization. A strong technological infrastructure that can speak to other data is necessary for communication across healthcare systems. There are already some initiatives in place to address this problem such as the Health Information Technology for Economic and Clinical Health (HITECH) Act which focuses on using health information technology in a meaningful manner. There are also standards in place that define the flow of information between electronic health record (EHR) and clinical research databases and registries (Katzan & Rudick, 2012). In my opinion, I agree with this statement that more data standardization is necessary for use of EHR data in research. More standardization may relieve patients and ensure that their data is strongly protected through these standard practices when transferred from one system to another. The transfer of information is necessary given that people often move through multiple healthcare facilities in their lifetime and fluidity of EHR transfer between facilities is important for excellent patient care.
In my opinion, using patient data for research purposes is necessary to expand our knowledge of disease treatment and prevention. However, standardized informatics frameworks must be developed and closely monitored and secured for the successful utilization of EHR data. These information frameworks exists and are designed to expand access to data within a system and provide an expansion of the system to additional sites. Two current examples of these systems include the Cancer Biomedical Informatics Grid (caBIG) and the Informatics for Integrating Biology and the Bedside (i2b2) (Katzan & Rudick, 2012). These platforms allow for the integration of clinical research and clinical care data by linking data elements that are external to the EHR.
Overall, patient clinical data needs to be well protected via a strong technological infrastructure, however, data should not be restricted from provider access. Access to patient data for providers and research will improve patient care and indirectly benefit patients from research findings. Stronger EHR data fluidity and standardization will instill higher trust from patients, create more capable healthcare teams, and will allow providers to implement the best patient care possible.
Sources:
Caine, K., Tierney, W. Point and counterpoint: Patient control of access to data in their electronic health records. Journal of General Internal Medicine. 2014;30(S1): 38-41.
Katzan, I., Rudick, R. Time to integrated clinical and research informatics. Science Translational Medicine. 2012;4(162): 162fs41162fs41.
Wyatt LH, Ferrance RJ. The musculoskeletal effects of diabetes mellitus. The Journal of the Canadian Chiropractic Association. 2006;50(1):43-50.
Katzan, I., Rudick, R. Time to integrated clinical and research informatics. Science Translational Medicine. 2012;4(162): 162fs41162fs41.
Wyatt LH, Ferrance RJ. The musculoskeletal effects of diabetes mellitus. The Journal of the Canadian Chiropractic Association. 2006;50(1):43-50.
Hi Therese,
ReplyDeleteI think you provide a valid argument as to why practitioners should have full information to their client's information. I agree that it allows the practitioner to look up relevant information that is important for their field of practice. One thing that I did realize was that even if full disclosure of information is available to the practitioner, they are still limited as to what services they provide. Drawing on your example of a client with T2DM, let's assume BG variability affects the psychological thinking of a client. Since it is not in the scope of an RDN to provide mental help to a client if they disclose such information, the RDN could refer the client to other facilities that could assist them. However, I do see a middle ground as maybe the client could develop an eating disorder in conjunction with their DM. In this case the practitioner can still refer the client to a mental health specialist, however if they are an RDN that specializes in EDs they can also work with the specialist in overcoming their personal struggles. So I do see the value of the practitioner having full disclosure to the patient's information. However, there is also the problem were some practitioners overstep their boundaries, and provide services they are not qualified to handle. For instance, maybe an RDN sees a note from a mental specialist the client is going through domestic abuse, and decides to provide their own council to see if it is affecting their eating habits. This is probably crossing a line as the RDN is providing a counsel they are not qualified in giving, and could result in a lawsuit. As I have learned from my undergrad MNT class, even if such disclosure of information is available, the practitioner should know what services they can provide to their clients. If the client disclose relevant information when such is available, the practitioner should use their best knowledge of referrals so they receive they the proper care. As I have indicated in my blog post, data on patient access to their EHR may actually increase the relationship between patient and practitioner, and thus allow more sensitive patient information to shared with practitioners. In conclusion, if full access to patient information is the best method I believe practitioners should only obtain the data most relevant to there practice, and fully respect the confidentiality of all other information by not even mentioning them.
Thank you for your opinion!
Hi Therese,
ReplyDeleteI really love your blog title and background picture. It is inviting and soothing to the eye. You did a great job in your blog post. I really liked the way in which you wrote it. It was thought provoking throughout.
You were able to summarize the arguments to both sides of the discussion well. The main points of overloading health care providers with information versus allowing clinicians all the information they need to make informed decision were clearly discussed. We both agree that seeking a happy medium between the two is necessary. I also agree with you that having as much information as possible delivers the best patient care. Anything that could potentially be unsafe to a patient is not anyone’s goal.
I liked the example that you gave regarding how sharing information about diabetes is actually really necessary for a chiropractor to know and to understand the patient in order to develop the best course of treatment. As I was thinking of examples regarding mental health and how some providers wouldn’t need to know about it, I had a hard time coming up with a clinician that shouldn’t know about mental health issues since it can impact many systems of the body. (1)
After being in the field practicing as a dietitian, I have found that parts of the patient’s health record that I do not think are pertinent, can actually play a role in understanding the patient as a whole. I don’t think I have ever thought, “I wish I didn’t have this information,” regarding a patient. I do understand that too much information can be overwhelming, but if the clinician is savvy with how to access the information that they need, the less the overwhelm will play into their treatment of the patient. That is what I have found in my experience.
I liked how you brought in other areas of the course into this post, it was a nice way to tie what we have learned together. I agree with your conclusion about the necessity of using patient data for research, but doing so in a way that creates security for the patient. I also agree that providers should not have restricted access.
Thanks for sharing and great job!
Chelsea
References:
1). Mental Health Foundation. (2018). https://www.mentalhealth.org.uk/a-to-z/p/physical-health-and-mental-health