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You have to manage patient data for a new project. What are the best online resources to use?

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Managing patient data is a crucial skill for any patient advocate, especially when working on a new project that involves collecting, analyzing, and sharing sensitive information. You need to ensure that you follow the best practices for data security, privacy, and quality, as well as comply with the relevant regulations and standards. Fortunately, there are many online resources that can help you learn and apply the skills and tools you need to manage patient data effectively. Here are some of the best ones to use.

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Matthew Montoya

Freelancer working from home

1 Online Courses

One of the best ways to learn the basics and the advanced topics of patient data management is to enroll in an online course that covers the theory and the practice of this field. There are many options available, depending on your level of experience, your budget, and your learning goals. Some of the most reputable and popular online courses are offered by Coursera, edX, Udemy, and FutureLearn. These platforms provide courses from leading universities and organizations, such as Johns Hopkins University, Duke University, the University of Michigan, and the World Health Organization. You can choose from courses that focus on specific aspects of patient data management, such as data analysis, data visualization, data quality, data protection, or data governance, or courses that offer a comprehensive overview of the whole process. Some of the courses are free, while others require a fee or a subscription. Most of the courses are self-paced and flexible, allowing you to learn at your own convenience and pace.

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Matthew Montoya

Freelancer working from home
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Alison.com has a wide variety of free online certificate programs. Great learning is another great resource. Of course, accredited certificate programs will require out of pocket payment.

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Kolby Kolibas

AI Aficionado | Marketing Maestro | Driving Growth with Innovative Strategies in Mental Health
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Be wise in your tool selection journey to avoid overspending or settling for something that isn’t ideal or doesn't work. Key considerations for tool evaluation: - Practice Size & Users: Ensure scalability for your practice's size, user base, & patient volume. - Ease of Use: Is the tool easy to understand and will the team use it? - Cost / Value: Factor in the total cost, including setup, training, & maintenance. Some EHR options to review: Allscripts: Good for any practice size. Epic Systems: Good for larger facilities. Cerner: Flexible for various healthcare environments. Remember, picking the best EHR is like finding the right pair of glasses; it must clear your vision without causing headaches.

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2 Online Tools

Another essential resource for managing patient data is the online tools that can help you perform various tasks and functions related to data collection, storage, processing, and dissemination. There are many online tools that can assist you with different aspects of patient data management, such as survey creation, data entry, data validation, data cleaning, data analysis, data visualization, data reporting, and data sharing. Some of the most widely used and trusted online tools are Google Forms, Google Sheets, Google Data Studio, Qualtrics, SurveyMonkey, REDCap, Excel, R, Python, Tableau, Power BI, and Dropbox. These tools are designed to be user-friendly and compatible with different formats and platforms. Some of the tools are free, while others require a fee or a subscription. Most of the tools offer tutorials and support to help you learn how to use them effectively.

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Matthew Montoya

Freelancer working from home
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OpenEMR is a free open-source electronic health record and medical practice management application. Connecting a SurveyMonkey survey to Microsoft Excel is a great way to achieve data analysis.

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Henrique Nixon

Innovation | Strategy | Digital Transformation | Health Technology | Interoperability | Leadership | Artificial Intelligence | Blockchain | Cloud Infrastructure | Strategic Partnerships | HL7/FHIR
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Managing clinical information is complex and initially requires distinguishing between the Electronic Medical Record (complete data), Electronic Health Record (timeline), and Minimum Data Set for Health Care (Summary). After defining these categories, it's crucial to establish standards for information exchange, such as using HL7/FHIR for discharge summaries or LOINC for test coding. A common reason for the failure of Health Lake and Artificial Intelligence projects is the lack of an effective strategy for data storage, transfer, and manipulation. The key is to start with a small and manageable set of data, focusing on interoperability and the value that these data bring. This is the secret to success.

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3 Online Communities

A third valuable resource for managing patient data is the online communities that can provide you with support, feedback, advice, and inspiration from other patient advocates and data experts. There are many online communities that can connect you with people who share your interests and challenges in patient data management, such as forums, blogs, podcasts, webinars, newsletters, and social media groups. Some of the most active and helpful online communities are Patient Advocate Network, Health Data Management, Data Science Central, DataCamp Community, Data Visualization Society, and Data Literacy Project. These communities offer opportunities to ask questions, share experiences, learn best practices, discover new tools and techniques, and network with peers and mentors. Some of the communities are free, while others require a fee or a membership. Most of the communities are open and welcoming to anyone who wants to join and contribute.

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Matthew Montoya

Freelancer working from home
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The Patient and Healthcare Advocate Facebook group is a great place to engage with other advocates. It's a moderated group so you know that you aren't going to run into any nefarious characters there.

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Peter Nooteboom, PhD

Senior Data Scientist | PhD in Health & Quantitative Psychology | Product Analytics | Machine Learning | Digital Health
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Tapping into these communities transforms challenges into growth opportunities, fostering innovation through shared experiences. Active engagement offers direct access to cutting-edge solutions and practical insights in health data management.

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4 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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Aline Gomez-Acebo Finat
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Depending on the country regulation varies. It’s important to know whether the tool you selected is compliant with the local data protection regulation, within the data treatment and storage. Patient data is one of the most complex and valuable data, but also a big responsibility.

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You have to manage patient data for a new project. What are the best online resources to use?

1

2

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4

1 Online Courses

2 Online Tools

3 Online Communities

4 Here’s what else to consider

Patient Advocacy

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You have to manage patient data for a new project. What are the best online resources to use?

1

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3

4

1 Online Courses

2 Online Tools

3 Online Communities

4 Here’s what else to consider

Patient Advocacy

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