11 KPIs for Measuring Health Information Management Department Success

11 KPIs for Measuring Health Information Management Department Success

July 2, 2025

11 KPIs for Measuring Health Information Management Department Success

In the healthcare industry, key performance indicators (KPI) and data analysis are critical to ensuring organizations stay on track to meet strategic goals. As one comprehensive case study shows, analyzing the right KPIs and effectively communicating them to other stakeholders can help create trusted healthcare benchmarks, emphasize the value of the health information management department, and develop staff pride in their performance. 

In fact, KPIs can help organizations measure and improve the quality of care delivered, while providing key insights for boosting revenue integrity, operational efficiency, and so much more.  

But determining what kind of data to collect can be difficult for many organizations, particularly amid staffing challenges and fast-paced environments. Here are 11 well-defined performance measures that every health information management department should monitor. 

1. Data Accuracy and Completeness 

This metric accounts for the percentage of errors or incomplete data present in patient records. Data accuracy KPIs could include the frequency of patient name misspellings, date of birth transpositions, or missing addresses.  

Why It Matters

Accurate and complete data contributes to robust data analytics and accurate coding for healthcare. It also helps prevent duplicate records and enables efficient health information exchange (HIE). Errors and omissions — particularly those that can occur during data migration, as discussed in a blog on the Olah website — may lead to inaccurate conclusions, mistrust, and poorly informed decisions. 

2. Data Accessibility and Availability 

Data accessibility refers to the amount of time it takes for a provider or staff member to access data — including legacy data — in the electronic health record (EHR). Examples of this metric include the time it takes to access data, the data request success rate, the data discoverability score, metadata completeness, platform uptime, and EHR time per patient. 

Why It Matters

Data accessibility is a critical metric that can help an organization identify lag time or bottlenecks that impact providers’ ability to spend quality time with their patients. Promoting efficient access to EHR data, including archived data, at the point of care supports patient safety and high-quality patient care.

3. Turnaround Time for Information Requests 

Turnaround time accounts for the amount of time it takes a covered entity — or a business associate working on its behalf — to share information in the EHR with individuals or their personal representatives 

By law, covered entities must provide access to protected health information (PHI) within 30 calendar days from receiving the individual’s request. This metric helps an organization evaluate whether they’re meeting that requirement or not. It can also include the average turnaround time for data requests, first response time, or response time service level agreement compliance. 

Why It Matters

Providers can be fined for not complying with timely access requirements under HIPAA. Providing individuals with easy access to their health information empowers them to be more in control of decisions related to their health and well-being. Timely responses are also important in terms of maintaining positive patient relationships.   

4. Medical Coding Accuracy 

This metric helps organizations evaluate the percentage of incorrectly coded diagnoses and procedures, which can impact both revenue cycle management and patient care. This category of KPIs includes each department’s coding accuracy rate, coding error rate, correct DRG rate, audit pass rate, and denial rate due to coding. 

Why It Matters

Coding for healthcare requires precision. Coded data drives clinical care, payment, research, and more. It’s important to assign accurate and complete medical codes to promote data and revenue integrity.  

5. Regulatory Standards Compliance

For operational and finance teams, this metric is particularly critical. It accounts for the number of errors resulting in fees, HIPAA violations, or regulatory violations. That could include the number of data breaches reported, medication error rate, or the frequency of overbilling incidents. 

Why It Matters

Over time, healthcare regulatory compliance fees and violations create an enormous financial burden. They can also jeopardize patient safety and cause reputational harm. This KPI can help organizations identify and rectify costly errors related to federal, state, or local regulations to preserve revenue integrity. 

6. Patient Privacy and Data Security Incident Rate 

Patient privacy is crucial not only to protecting patients as they move through the healthcare system but also to avoiding costly, disruptive, and time-consuming noncompliance situations. This KPI focuses on the number of attempted and/or successful data breaches over a specific period, which can include metrics such as incident rate, time to detect, time to respond, volume of data exposed, or policy violation rate. 

Why It Matters

Monitoring these metrics helps healthcare organizations avoid costly data breaches that may require compliance with breach notification requirements, participation in a resolution agreement with the Office for Civil Rights, and payment of a civil monetary penalty. These KPIs help ensure data protection, compliance, and operational stability. 

7. Record Retention Compliance 

Record retention compliance refers to the number of times a hospital doesn’t adhere to state-specific record retention guidelines. Metrics under this category could include retention compliance rate, the volume of records past retention, record retention audit findings, and user adherence rate. 

Why It Matters

Retaining records according to state requirements is important for legal compliance, such as in the event of an investigation, audit, or lawsuit. It can also be crucial for continuity of care, public health and research, and healthcare regulatory compliance with patient access requirements. Monitoring relevant health information management department KPIs ensures organizations can provide the best possible patient care and defend themselves in legal matters.   

8. EHR Utilization Rate 

EHR utilization rate is the number of individual organizations or staff members who use the systemwide EHR for their work. There are several metrics under this category, including EHR log-in frequency (especially during patient visits), chart completion time, note completion rate, inbox management time, clinical decision support engagement, order entry rate, and use of templates or smart phrases.  

Why It Matters

These metrics help healthcare organizations pinpoint areas for EHR enhancements to ease the burden on physicians and improve patient care. They also ensure providers can use EHRs for patient care coordination, operational efficiency, and healthcare regulatory compliance 

9. Medical Chart Abstraction Timeliness 

Providers and staff need efficient ways to access data, as tracking information down manually can be time-consuming. This KPI accounts for the amount of time it takes for a staff member to extract specific data from a medical record.  

Examples of this metric category include turnaround time from chart availability to completion of abstraction, medical chart abstraction completeness rate, medical chart abstraction accuracy rate, medical chart abstraction error rate, and charts abstracted per hour or day. 

Why It Matters

Monitoring these KPIs helps healthcare organizations promote timely clinical decision making, billing, and data submission. It also helps organizations track health outcomes, identify trends for improvement, and support population health efforts. 

10. Cost per Medical Record Processed 

This finance-oriented KPI is the dollar amount per record associated with ensuring payment for services rendered. It includes several key metrics, including the cost to collect, the total cost of collections, and the total cash collected. 

Why It Matters

These health information management department KPIs are important because they measure the efficiency of a healthcare organization in collecting the money it’s owed. By analyzing this data, organizations can identify where they might be losing money to inefficiencies or errors. 

11. Revenue Cycle Efficiency 

While there are a number of KPIs related to revenue, this one focuses on how quickly a healthcare organization can collect money owed. In short, it measures an organization’s financial efficiency and cash flow. Specific metrics under this category include accounts receivable days, write-off rate, net collection rate, claim denial rate, first pass resolution rate, bad debt rate, and patient collections. 

Why It Matters

Revenue cycle management is critical to any healthcare organization, as it can impact the organization’s ability to retain staff, effectively care for patients, and maintain financial sustainability. Monitoring these KPIs helps healthcare organizations pinpoint areas for revenue cycle improvement that can enhance cash flow and promote long-term financial stability.  

Leveraging Health Information Management To Support Data Efforts 

Tracking the right KPIs helps maintain the efficiency, security, and profitability of a healthcare organization. Poor data quality, subpar data protection, and data inaccessibility undermine efforts to improve performance.  

That’s why it’s important for health information management departments to set the stage for success. Regularly monitoring and analyzing the right KPIs can improve care, enhance operational efficiency, and ensure compliance with healthcare regulations. Working with a strategic partner like Verisma can help you zero in on how to identify and use insights from that information to improve your HIM operations. Contact us today to learn more.  

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Preparing for RADV Audits: Key Considerations for Health Plans

Preparing for RADV Audits: Key Considerations for Health Plans

By Jeannie Hennum
General Manager, Value Based Care
Verisma
June 24, 2025

My esteemed colleague and government affairs/policy guru Elizabeth McElhiney recently published a blog for providers detailing an announcement from the Centers for Medicare and Medicaid Services (CMS) regarding their initiative to rapidly administer outstanding Risk Adjustment Data Validation (RADV) audits and expand the parameters of new RADV audits by September 1.

The audits are important to the entire healthcare system – safeguarding the accuracy and integrity of health plan data, and the effort is part of the federal government’s effort to remove fraud, waste and abuse (FWA) in Medicare Advantage (MA) programs.

RADV Refresher

Because this hasn’t been an active program for eight years, let’s review.

Risk Adjustment is a CMS process that is used by health plans to determine their enrollees’ (patients, members) health status, specifically identifying any chronic conditions the patients have (or potentially will have), which in turn most likely will result in the need for additional healthcare and services. Hierarchical Condition Categories (HCC) coders review the medical records, identifying and coding the patients’ chronic conditions. The coding results are used to generate each enrollees’ Risk Adjustment Factor (RAF) score and provide the basis for reporting submissions to CMS. These results also help support care management programs for the patients. Based on the health plans’ submissions, CMS then provides additional funding needed to ensure the patients receive the necessary benefits and services promoting better health outcomes for the patients.

RADV (Risk Adjustment Data Validation) audits are generated by CMS to ensure the health plans have submitted accurate diagnosis data. RADV audits require health plans to submit the best medical record to validate the patients’ chronic conditions – basically, to provide a “receipt.” The RADV audits have short timeframes and stringent requirements. Failure to validate potentially has significant financial penalties for health plans, primarily stemming from recoupment of overpayments.

Recent changes to RADV for payment years beginning in 2018 will let CMS extrapolate to calculate the overpayment from the sample and then recoup that total amount. For instance, if the health plan has coded/submitted the “diabetes” for a patient, but they cannot provide the medical record to support this diagnosis during the RADV audit, CMS may recoup the funding back from the health plan for this patient and for all other members diagnosed with diabetes. Other penalties the health plan may face are false claims liability and exclusion from government healthcare programs.

Accurate risk adjustment is crucial for ensuring health plans receive appropriate compensation for the care of patients, promoting fairness and stability in the healthcare system.

Where It All Began

RADV audits started in 2002 with the Improper Payments Information Act (IPIA), and it has been revised numerous times. CMS is several years behind finishing these audits, and the Trump administration wants to complete all RADV audits for payment years (PY) 2018 to 2024 by early next year.

To do so, CMS is hiring 2,000 coders and deploying enhanced tech to meet the deadline. They’re also increasing the amount of medical records it will audit from 35 records per health plan to 200, and audits from 60 MA plans annually to all (approximately) 550 plans – a 900 percent increase.

RADV’s Importance

  • Financial Accuracy: RADV ensures health plans are compensated accurately based on the risk profiles of enrollees, encompassing significant financial implications for health plans.
  • Quality Care: Accurate data is essential for identifying high-risk individuals and ensuring they receive necessary care, helping improve health outcomes.
  • Compliance: RADV audits help ensure compliance and mitigate the risk of penalties and sanctions.

Important Health Plan Considerations

  • Implement robust data validation processes and regularly review and update information to prevent errors.
  • Align with providers to ensure medical records are complete and accurate.
  • Train staff on the importance of correct diagnosis coding and documentation to help improve data accuracy and reduce the risk of errors during RADV audits.

RADV is a crucial element of the healthcare system, ensuring CMS funding is accurate and payment is made only for documented services and diagnoses. Health plans can promote financial stability, improve quality of care, and ensure CMS regulation compliance.

Verisma has helped providers navigate accurate health information for 20+ years and we’re ready to meet the demand of these volumes for payers, too. Contact us today to discuss how we can help.

 

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Preparing for Risk Adjustment Data Validation (RADV) Audits

Preparing for Risk Adjustment Data Validation (RADV) Audits

By Elizabeth McElhiney, MHA, CHPS, CPHIMS, CDH-L, CRIS, CC
Director of Government Affairs and Policy
Verisma
June 23, 2025

The Centers for Medicare and Medicaid Services (CMS) announced an initiative late last month to rapidly complete outstanding Risk Adjustment Data Validation (RADV) audits while expanding the parameters of new RADV audits by September 1. The audits ensure the accuracy and integrity of health plan data, and the effort is part of the federal government’s effort to eliminate fraud, waste and abuse (FWA) in Medicare Advantage (MA) programs – impacting providers and patients.

While you’re familiar with Medicare Risk Adjustment (MRA) reviews, it’s unlikely you’ve seen a RADV audit. So, what’s the difference?

  • Annual MRA audits, issued first, are used by MA plan to determine patient risk adjustment factor (RAF) to predict healthcare costs by reviewing medical records, evaluating diagnoses, and assessing demographical information including age and gender to determine health status and provider payments. The higher the RAF, the more money CMS pays the MA plan.
  • RADV audits, issued second, are for data validation to gauge if insurance companies have correctly calculated RAF scores. These audits ensure treatment leading to diagnosis in a RAF score is documented in the medical record, removing risk MA plans don’t say patients are sicker than they are. If the government finds a RAF score is calculated incorrectly or doesn’t receive records to audit, it can recoup the overpayment from the MA plan and the facility. Recent changes to the RADV program will let CMS extrapolate the overpayment amount for a health plan from the sample and then recoup that total amount. These changes are similar to how the RAC program can recoup overpayments.

Why am I just hearing about this?

RADV audits have been around since 2002’s Improper Payments Information Act (IPIA) and the program has been modified multiple times. Because CMS is several years behind completing these audits, the Trump administration wants to finish all remaining RADV audits for payment years (PY) 2018 to 2024 by early 2026.

This initiative received widespread attention because efforts to detect and eliminate FWA are high priorities for the current administration. CMS will hire approximately 2,000 coders in the upcoming months and deploy enhanced technology to meet this deadline. At the same time, CMS is increasing the number of medical records it will audit from 35 records per health plan to 200, and its audits from 60 MA plans annually to all (approximately) 550 plans – a 900 percent increase.

While your practice or organization probably sees many MA patients, the odds of encountering a large number of RADV audits has always been low. Selected records are based on MA plan participation and these patients could have been treated by any provider. The only commonality is their MA plan.

Preparing for RADV Audits

It’s important to remember RADV audits need to be returned to the health plan and not CMS. This can be confusing for new ROI specialists and health information (HI) professionals because the request packet will come with a CMS letter. HI professionals must comply with these requests quickly, ensuring records are provided to the requestor by the due date.

Preparation is key. Here are some steps healthcare providers can take:

  • Maintain Accurate Records: Ensure all diagnosis data is accurately documented and updated.
  • Regular Training: Provide ongoing staff training on proper documentation practices, releasing appropriate records, and RADV compliance requirements.
  • Create an Action Plan: Train staff to identify RADV audits and notify management when they’re received. Examine whether you can handle additional audits with existing staff or if you will need to supplement with external resources.

RADV audits are a critical component of the healthcare system, ensuring MA payments are accurate and payment is made only for the services and diagnoses documented. By understanding the importance of these audits and taking proactive preparation steps, healthcare providers can navigate the process smoothly and maintain compliance with CMS regulations.

 

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Protecting Patient Privacy: My Florida Senate Bill 1606 Testimony

Protecting Patient Privacy: My Florida Senate Bill 1606 Testimony

By Elizabeth McElhiney, MHA, CHPS, CPHIMS, CDH-L, CRIS, CC
Director of Compliance and Government Affairs
Verisma
June 10, 2025

I had the opportunity this spring to appear before a Florida State Senate committee to share a personal story pulled from my nearly 20 years as a health information professional – emphasizing the importance of protecting patient privacy and opposing SB 1606 as written.

As I prepared my testimony, I remembered the countless individuals who entrusted me with their most sensitive information. The important story I shared underscores the critical need for maintaining patient privacy protection.

A little over ten years ago, a woman came to my office with her children. She was there to request medical records, which at first seemed routine. However, as she completed the necessary forms, she quietly pulled me aside and made a special request: she asked me to ensure any bills related to her records would be sent directly to her attorney instead of her home.

The records she needed were related to abuse evaluations. She feared if her husband saw an invoice for medical record copies, he would realize she had taken the children to see a doctor and would know she was planning to leave him. This brave mother was concerned not only for her own safety, but also for the wellbeing of her children.

Fortunately, under existing HIPAA regulations, she was able to narrowly select the information to be released and designate an alternate address for communication to protect her privacy. However, this protection could be jeopardized by proposed legislation, including Florida’s SB 1606.

If SB 1606 and other bills like it pass, it would allow a patient’s attorney – sometimes any attorney – access to their entire medical record, including sensitive information like domestic violence evaluations and behavioral health treatment. This unrestricted access would expose vulnerable individuals to greater risks. In this mother’s case, her abuser could gain access to her sensitive information and even learn about her upcoming appointments, putting her safety in jeopardy.

This story is not unique. Sadly, I have encountered many domestic violence survivors over the years who rely on the privacy protections guaranteed by HIPAA to keep them safe. These laws have been in place for over two decades, ensuring only patients have unfettered access to their medical records because they are best equipped to assess the risks associated with disclosing their health information.

The passage of SB 1606 would strip patients of this critical ability, harming the most vulnerable among us. While there are numerous other concerns regarding SB 1606, this story highlights the deep personal and significant impact such legislation could have.

It is easy to focus on the technical aspects of medical records requests, including turnaround times and compliance, but we must remember each request represents a real person facing a significant challenge. Very few people request their medical records unless something has gone wrong in their lives.

I know the critical importance of patients being able to access their medical records. At the same time, I know patient portals are not designed to limit the information released. If only a patient can access a portal, there is not a need to withhold HIV test results or substance abuse treatment.

The changes proposed by Florida’s SB 1606 would primarily benefit a select few, while causing significant harm to vulnerable patients. It is crucial we continue to uphold the privacy protections that have safeguarded patient information for so long.

Let us remain vigilant in protecting patient privacy and ensure every individual’s sensitive information remains secure.

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7 Ways Health Information Management Professionals Can Enhance Their Impact

7 Ways Health Information Management Professionals Can Enhance Their Impact

May 21, 2025

As today’s hospital leaders look for ways to effectively manage healthcare data, they’re increasingly turning to health information management (HIM) professionals for valuable insights. As stewards of patient health information (PHI) and data, these professionals are often responsible for managing data from end to end, including collecting, storing, and sharing it with the organization. 

As a health information management professional, you possess technical and analytical skills that enable you to play a critical role in protecting data, ensuring its accuracy so your organization can use it effectively, and streamlining workflows so stakeholders from clinicians to administrative staff have the information they need, when they need it. 

But while your reach can be extensive, focusing on key priorities can help you maximize your impact. Here’s a look at seven ways you can best support your health system.  

1. Provide Leaders With Accurate Data for Decision-Making 

Health information management professionals are well-positioned to validate and interpret patient data because they understand why and how it’s captured.  

You and your team recognize how clinical documentation translates to the coded data necessary for clinical decision support, operational efficiency, financial management, population health management, and treatment personalization.  

By providing organized, accessible data to your organization, you can help transform how teams interpret and apply that information. Armed with accurate and complete data, hospital leaders, clinicians, and others can identify patterns, uncover insights, and make evidence-based decisions to drive better patient outcomes.  

2. Evaluate AI-Driven Solutions for Efficiency and Cost Effectiveness 

HIM professionals assist hospital leaders in balancing innovation with budget constraints. Not every new project or technology is cost effective, nor is it right for every organization. But by understanding vendor offerings and leveraging data to evaluate the return on investment (ROI) of new technologies — including clinical information systems — you can help your leaders make the right investments at the right time. 

For instance, you can provide financial data to ensure that expenditures on clinical data management software and other artificial intelligence (AI)-driven solutions align with business objectives. Or you can help measure the potential impact of these solutions on patient care and operational efficiency. Using your health information management skills, you can explore cost-effective clinical data management software solutions and establish metrics to monitor ongoing performance.  

3. Streamline Real-Time End-User PHI Access 

Individuals with health information management skills help organizations implement systems that improve immediate access to personal health information (PHI), which can help boost clinical and operational outcomes, according to the American Hospital Association. 

Your team’s extensive experience with clinical and administrative workflows — coupled with their knowledge of HIPAA regulations — makes them ideal experts to reduce bottlenecks in data retrieval and ensure data accessibility that doesn’t compromise security.  

When exploring different clinical information systems, for example, your team of health information management professionals can ensure the system chosen displays relevant data that clinicians need to assess and treat each patient on a single, customizable dashboard. Similarly, you and your team know the warning signs of when it’s time to archive EHR data and can sound the alarms before a lack of access to healthcare data becomes problematic. 

4. Increase Interoperability  

Integrating different healthcare systems and software can be challenging for any healthcare organization. But with extensive knowledge of standardized data formats and communication protocols, health information management professionals can help organizations overcome these difficulties. 

Your team specializes in data exchange procedures, which is critical for any technology integration. As such, you can improve data exchange between departments and external providers by advocating for the adoption of technology that uses universal data standards (e.g., Health Level 7, Fast Healthcare Interoperability Resources, and Digital Imaging and Communications in Medicine standards) and application programming interfaces (APIs).  

You can also help ensure your organization complies with government regulations to enforce interoperability. With interoperable systems, your organization can communicate, share, and use patient data efficiently across various platforms to coordinate care, promote patient safety, enhance operational efficiency, and increase patient engagement.   

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5. Keep Pace With New Security Standards and Regulations 

As health information management professionals, it’s you and your team’s responsibility to stay on top of ever-evolving data management compliance requirements. That expertise puts you in the perfect position to quickly identify best practices for protecting patient data from breaches and cyber threats, including ransomware, insider threats, device and network vulnerabilities, and cloud security risks.  

These best practices include: 

  • Archiving data in legacy systems
  • Implementing strong access controls
  • Ensuring data encryption
  • Performing security audits and vulnerability assessments
  • Creating backup and disaster recovery plans
  • Providing employee training and security awareness programs 

As HIPAA experts, your team can also help prepare your organization for proposed HIPAA changes that include enhanced PHI access for patients, new cybersecurity standards, and more. 

6. Ensure Accurate Documentation to Support Better Care and Outcomes  

Accurate data is crucial to not only making informed decisions, but also enhancing billing, compliance, and quality reporting. Health information management professionals play a key role in educating physicians and staff about best practices for keeping data accurate and up to date.  

For example, implementing guardrails such as real-time data validation, automated data cleansing tools, and machine learning anomaly-detection tools can help you reduce documentation errors that impact patient care in your organization. 

By employing your health information management skills, you can help mitigate the risks of incomplete data, duplicate records, and outdated information, as well as leverage technologies like templates, AI tools, and physician-assisted documentation to improve documentation efficiency.  

7. Understand End Users’ Needs and Concerns 

Possessing keen insights into administrative and clinical information systems, your team of health information management professionals can easily identify pain points in existing or new applications and engage clinicians and administrative staff to improve workflows.  

Consider identifying and implementing strategies to streamline and automate manual administrative tasks, such as: 

  • Helping your organization go paperless to automate clinical and administrative workflow bottlenecks 
  • Capturing clinical and administrative data prior to appointments 
  • Leveraging AI to reduce the physician clinical documentation burden 
  • Ensuring clinical decision support systems integrate into the clinician’s workflow 

By providing training and support focused on technical skills and change management strategies, you can also ensure smooth technology adoption. 

Other important contributions? Your team can provide valuable end-user insights during legacy data migration projects and ask important operational questions when converting and transferring healthcare data from one system to another to ensure success.  

The Foundation for Better Data Management 

Health information management professionals are more than data managers. They’re regulatory experts, decision-making guides, documentation optimizers, and so much more.  

By prioritizing the key areas that make the biggest impact on your organization, you can help leaders successfully manage the data lifecycle. 

Learn how Verisma’s data archiving solution, Olah™, can augment these efforts, providing a new and better way to archive and access legacy health information.

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Celebrating Autism Awareness Month and Its Impact on Patient Privacy

Celebrating Autism Awareness Month and Its Impact on Patient Privacy

By Elizabeth McElhiney, MHA, CHPS, CPHIMS, CDH-L, CRIS, CC
Director of Government Affairs and Policy
Verisma
April 30, 2025

This post does not include a link to a speaking engagement or webinar. It is something rather personal. So, I am going to just dive in.

I am autistic, which some may know, and the end of this Autism Awareness month has made me unusually reflective. While I have brought it up during conversations, presentations and roundtables I have not gone out of my way to be vocal about my diagnosis.

Part of it is because I was not officially diagnosed until after I was 40.
I am also frequently told I do not look autistic, to which I want to say you have probably not spent enough time with me and I have had a lot of practice masking it.

In addition, there are real, potential consequences to disclosing my diagnosis. There is still a lot of misinformation about autism. Even if you are disclosing to someone you trust, you never remove the fear you will always have that asterisk after your name.

There is good reason for that fear. Autistic adults may be reluctant to apply to be foster parents because they’re afraid they won’t be accepted. We are also less likely to be believed by some healthcare providers, which can contribute to the average autistic lifespan being two decades less than the American average.

But I have learned not being authentically myself only hurts me, mentally and physically. For instance, I have had actual chest pain but that is a story for another post.

It is in this spirit that I am sharing my story. I think the more autistic people are open about their diagnosis, the better the community will understand the autism spectrum. There is not a typical autistic person, and we all deserve respect and support.

I also think it demystifies autism. I know there are more people out there who have not been diagnosed or were diagnosed later in life. I was told I could not be autistic because I had been in a relationship for 15+ years and could make eye contact. Being diagnosed a decade ago would have saved so much stress.

Finally, autism has reframed my understanding of how policymakers and health information professionals should approach patient privacy. Before my diagnosis, I thought I had a solid understanding of what privacy meant to an individual. It was not until my diagnosis, I truly understood why parents or patients may not share their complete medical history with providers … and the consequences, right or wrong, of disclosing a diagnosis.

There is a saying in the autism advocacy community: “Nothing about us without us.”

I love this motto.

I believe a health information professional’s job is to protect patients, autistic or not, and educate them on their right to disclose protected health information. Patients should be given this information in an understandable format and allowed to decide what, when, and to whom information is disclosed.

I suppose it is fitting HIP Week overlaps with Autism Awareness Month. All patients, particularly those in vulnerable populations, need to feel they control their health information, and it is securely kept. Health information professionals are uniquely positioned to advocate for patients and families. Belonging to both groups has emphasized the critical role my peers play in ensuring a patient’s trust. My hope is more health information professionals will feel comfortable and empowered to leverage experiences to move beyond daily work and examine how they can help patients understand privacy rights.

 

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