Errors in your medical records
Have errors in your medical records impacted your diagnosis and management of multiple sclerosis? Here are some of my thoughts on this endemic problem in the NHS.
You will have seen this morning that many news channels are reporting on a Healthwatch report (dated 01/05/2025) regarding errors in NHS medical notes.
Among the reported errors:
26% related to personal details such as name or date of birth
16% involved medications they had taken
9% of errors incorrectly listed them as having had a particular illness
9% reported that they had taken specific medications to treat an ailment when they hadn’t
10% said they had been given wrong or inappropriate medicines as a result of the error
9% said they had received potentially unsafe care or treatment
12% reported that inaccurate or missing information had led to their being refused treatment
Wow, this is a much bigger problem than I have anticipated, and it demands thoughtful consideration and introspection. Does it impact the diagnosis and management of multiple sclerosis? Here are some of my thoughts.
The delivery of safe, effective, and coordinated healthcare within the NHS relies on the quality of patient records. For individuals living with MS, these records are not merely administrative archives but a clinical tool that underpins virtually every aspect of your care. Accurate and comprehensive records form the essential foundation for clinical decision-making, enabling healthcare professionals (HCPs) to formulate appropriate treatment plans, manage medications safely, monitor disease progression, and coordinate care across diverse teams and settings. They contain the narrative of your health, encompassing past diagnoses, treatments, allergies, medications, and investigation results, all of which are vital for informed care.
The transition to Electronic Health Records (EHRs), often termed Electronic Patient Records (EPRs) within the NHS, was meant to enhance this foundation by improving the accessibility, legibility, and potential for data sharing. The EHR is intended to consolidate your information, making it readily available to authorised staff, researchers, and increasingly, yourselves, thereby supporting safer and more consistent care. However, the benefits of EHRs are contingent upon the accuracy and completeness of the data entered, the effective use of standardised coding, and the seamless interoperability between different clinical IT systems – challenges that have yet to be overcome in practice. Missing, inaccurate, or non-standard information within any patient record system, paper or electronic, can lead to inconsistent care and pose significant risks to the quality and safety of care delivered.
Effectively managing MS necessitates detailed, accurate, and longitudinal patient data that captures the multifaceted nature of the condition. High-quality records are essential for tracking diagnostic information, the frequency and severity of relapses, changes in disability status ( measured using the Expanded Disability Status Scale, EDSS), the history and effectiveness of disease-modifying therapies (DMTs), management of symptoms (such as fatigue, pain, spasticity, cognitive dysfunction), the presence of comorbidities, and increasingly, patient-reported outcomes (PROs) that reflect the your quality of life and experience of the disease. Without such comprehensive data, optimising treatment strategies, coordinating care effectively, and monitoring for adverse events becomes exceptionally challenging.
Errors within NHS patient records are not isolated incidents but a significant and pervasive issue. This latest survey indicates that a substantial minority of patients have identified inaccuracies or missing information in their medical records; this figure is almost one in four (23%) adults in England. Research examining EHRs suggests that errors may be present in at least half of all records, with medication-related errors being widespread. While some errors may be minor with little clinical consequence, such as spelling mistakes or slightly incorrect dates, many have the potential to cause significant harm.
Several distinct types of errors are frequently reported:
Incorrect personal or demographic data: Errors in fundamental identifiers, such as names and dates of birth, are common and are cited as the most frequent blunder (26%).
Inaccurate clinical information: Records may contain factually incorrect clinical details. This includes documenting conditions the patient has never had (reported by 9%) or treatments, including surgeries, they never received (also 9%). Errors regarding the site of a problem (e.g., left leg instead of right) are also noted. Such inaccuracies fundamentally misrepresent the patient's clinical history and status.
Medication errors: These are a significant category of record inaccuracies. Errors include incorrect documentation of medication history (reported by 16% of findings errors), recording the wrong drug or dose, failing to document known drug allergies, or omitting medications the patient is taking. Prescribing errors (e.g., incorrect drug or dose selection, failure to check allergies) and administration errors (e.g., administering to the wrong patient, incorrect route or dose) are the most common types of medication errors overall.
Missing information (errors of omission): The absence of crucial information is a critical form of record error. Patients report that diagnosed health conditions are missing from their records (29% of those finding inaccuracies), as well as significant medical history, such as serious illnesses or hospital stays (29%). Missing allergy information is a recurring concern. Studies focusing on hospital settings reveal that missing clinical information is alarmingly common; one study found key information was missing in 15% of outpatient consultations. This can range from missing test results to entire sections of a patient's record being unavailable, sometimes due to records being lost or inaccessible before a specific date.
Coding Errors: The way clinical information is coded has a significant impact on data quality. High-quality records require appropriate and correct coding, ideally using standardised terminologies like SNOMED CT. However, inconsistent or incorrect coding practices hinder the ability to accurately aggregate data, ensure interoperability between systems, conduct research, and perform clinical audits. Poor coding quality in NHS hospital data, particularly for outpatient diagnoses, has been identified as a specific problem, making it challenging to reliably identify patients with conditions like MS from routine datasets.
Record Fragmentation and Interoperability Failures: Even when data is recorded accurately, it often exists in silos. A significant issue within the NHS is the lack of integration and effective data sharing among various services, including GP practices, hospitals, and community care providers. Patients frequently encounter situations where records are 'lost' between services, or clinicians in one setting cannot access relevant information recorded elsewhere. This fragmentation is exacerbated by the use of numerous different, often incompatible, EHR systems across NHS Trusts. One analysis found that NHS Trusts were using at least 21 different systems, which were unable to effectively share information, resulting in patients often having consecutive encounters at hospitals with incompatible systems.
Potential impact of errors on the diagnosis of MS
Challenges in MS diagnosis
Diagnosing MS presents inherent challenges due to the condition's variable presentation and the lack of a single definitive test. The diagnostic process typically relies on a combination of factors, including the patient's reported clinical history and symptoms, findings from neurological examinations, characteristic lesions detected on MRI, and, in some cases, cerebrospinal fluid analysis (via lumbar puncture) or evoked potentials. Crucially, diagnosis also involves excluding other conditions that can mimic MS symptoms, such as migraine, functional neurological disorders, certain infections, inflammatory conditions, or structural spinal problems.
This complexity means the diagnostic pathway for MS can be protracted, with potential for delays at multiple stages, from initial symptom presentation to GP referral, specialist assessment, and investigation. Studies indicate a concerning rate of initial misdiagnosis, with research suggesting that up to one in five individuals initially diagnosed with MS may have a different condition.
It is possible that errors and omissions in your records can significantly obstruct the already complex MS diagnostic process in several ways:
Missing or inaccurate symptom history
Incomplete neurological examination records
Lost or inaccessible investigation results
Incorrect diagnostic codes
Fragmentation of care records
Delays or errors in diagnosing MS, often contributed to by inadequate patient records, have significant negative consequences for patients, for example, delayed access to treatment, worsening anxiety.
Incorrect diagnosis
Delayed treatment
Relapse
Anxiety
Depression
Missed opportunities, for example, university, jobs, new partners, sports, etc.
Inappropriate treatment
Avoidable disability, for example, from further relapses
The vicious cycle of diagnostic delays and record quality
The relationship between poor record quality and diagnostic delay in MS can become a detrimental feedback loop. Initial record inaccuracies or omissions can contribute to diagnostic uncertainty and delays in treatment. This uncertainty might lead to the patient being referred to multiple specialists, perhaps across different NHS Trusts, as clinicians seek further opinions or navigate service availability issues.
Each of these encounters generates new clinical information – consultation notes, test results, imaging reports – often recorded within separate, non-interoperable IT systems. Critical information may fail to flow effectively between these different providers or back to the patient's primary GP record. Consequently, the patient's overall medical record becomes increasingly fragmented, dispersed across multiple locations and systems, and potentially contains contradictory information.
When a subsequent clinician attempts to consolidate this information to reach a definitive diagnosis, they face an even more challenging task due to the complex and fragmented nature of the data landscape. The very delay, in part, caused by initial record deficiencies, leads to further degradation of the overall record quality and accessibility. This creates a vicious cycle where poor records impede timely diagnosis, and the resulting protracted diagnostic process further fragments the patient's record, hindering future attempts at accurate diagnosis and coherent care planning.
Consequences of record errors for MS management and safety
Once a diagnosis of MS is established, accurate and accessible patient records remain crucial for safe and effective long-term management. Errors introduced at any stage can have profound consequences for treatment decisions, care coordination, monitoring, and overall patient safety.
Medication errors
Medication management in MS is complex, often involving potent DMTs alongside multiple drugs for symptom control and comorbidities. Record errors significantly increase the risk of medication-related harm.
DMT Initiation and Monitoring: The selection and initiation of DMTs depend heavily on an accurate diagnosis date, confirmed MS type (e.g., RRMS, active SPMS, active PPMS), and a reliable history of previous treatments and relapses. Inaccurate or missing information in the record can lead to the selection of an inappropriate DMT or delays in starting treatment. Furthermore, safe DMT use requires baseline investigations (e.g., blood tests, MRI) and regular monitoring for potential side effects. Missing baseline data or failure to accurately record and communicate monitoring results (e.g., abnormal liver function tests or low white cell counts) due to record-keeping failures can compromise patient safety. Errors in recording the specifics of DMT administration (e.g., dose, frequency, date of last infusion) can lead to missed doses, incorrect timing, or inappropriate treatment adjustments. The need for accurate tracking is underscored by instances where patients switched to biosimilar DMTs experienced side effects necessitating a switch back to the original therapy.
Symptomatic treatments and polypharmacy: PwMS often require numerous medications to manage symptoms like pain, spasticity, fatigue, bladder dysfunction, and depression, in addition to their DMT and treatments for any co-existing health conditions. This frequently leads to polypharmacy (typically defined as the concurrent use of five or more medications), which is common in pwMS and is associated with increased risks. Inaccurate or incomplete medication lists within the patient record – including omissions of prescribed drugs, over-the-counter medications, or supplements, or errors in doses and frequencies – dramatically increase the likelihood of adverse drug events. These include harmful drug-drug interactions, prescribing cascades (where a side effect is misinterpreted as a new condition and treated with another drug), or failure to identify opportunities for deprescribing unnecessary medications. Certain drug classes often used by MS patients for symptoms or comorbidities, such as anticoagulants, anticonvulsants, and opioids, are known to be frequently implicated in medication errors resulting in claims.
Prescribing errors: Incomplete or inaccurate records directly contribute to common prescribing errors. Failure to check for known allergies documented elsewhere in the system (or not documented at all) is a critical risk. Missing information about patient weight or renal function can lead to incorrect dosing of certain medications used in MS or for comorbidities. An incomplete list of current medications prevents clinicians from identifying potentially harmful interactions when prescribing new drugs.
Impeded care coordination and monitoring
Effective MS management necessitates a coordinated multidisciplinary team (MDT) approach and careful monitoring of disease activity and progression. Record errors severely undermine both aspects.
Fragmented multidisciplinary care: The care team for an MS patient may include neurologists, specialist MS nurses, GPs, physiotherapists, occupational therapists, psychologists, urologists, and social care professionals. Effective communication and shared understanding among these professionals are essential for coordinated care. However, record errors, poor data quality, and particularly the lack of interoperability between systems used by different services create significant barriers. Information recorded by a physiotherapist might not be visible to the neurologist; updates from the MS nurse may not reach the GP in a timely manner. MS nurses, who play a pivotal role in coordinating care, providing support, and monitoring DMTs, may lack crucial real-time information, such as recent hospital admissions or significant changes in the patient's condition reported to another provider, if records are not effectively shared. This fragmentation forces patients to repeatedly recount their history and symptoms to different professionals, which is inefficient and risks information loss or distortion.
Monitoring disease progression: Tracking the course of MS over time is crucial for informing treatment decisions, such as escalating disease-modifying therapies (DMTS) or adjusting symptom management strategies. This requires consistent and accurate documentation of key parameters, including clinical relapses (dates, severity, recovery), disability progression (e.g., regular EDSS scoring), changes observed on serial MRI scans, and patient-reported outcomes (PROs) reflecting functional status and quality of life. Inaccurate, incomplete, or missing documentation of these elements within the accessible record prevents clinicians from reliably assessing disease activity, identifying trends, or evaluating treatment effectiveness. The lack of nationally agreed-upon, standardised outcome measures for MS further complicates consistent monitoring across different services.
Managing relapses: Effective management of acute MS relapses depends on understanding the patient's baseline function and their history of previous relapses, including severity and response to treatments like corticosteroids. Missing or inaccurate information in the record can hinder timely and appropriate relapse management decisions. Furthermore, communication delays between the patient experiencing a relapse, their GP, and the specialist MS team, potentially exacerbated by inefficient record systems or lack of shared access, can delay the initiation of treatment.
Care planning: High-quality data is fundamental to developing comprehensive and personalised care plans. However, care planning is underutilised in neurology. Poor data quality, fragmentation, and a lack of shared access across the MDT make it extremely difficult to achieve meaningful, coordinated care planning. While digital care plans offer potential benefits, their effectiveness hinges on the availability of accurate, integrated data from all relevant sources.
Impact on Patient Experience and Trust
Beyond the direct clinical consequences, errors in medical records have a significant negative impact on the patient experience. Patients report considerable inconvenience, frustration, anxiety, and stress resulting from the need to constantly correct inaccurate information, fill in missing details for clinicians during appointments, or struggle to convince healthcare staff about their medical history. Discovering errors, particularly those involving incorrect diagnoses or treatments the patient never had, can be profoundly distressing and undermine confidence in the healthcare system. This erosion of trust can damage the therapeutic relationship between patients and clinicians. The negative impact can also extend beyond healthcare settings, creating difficulties with applications for benefits (such as Personal Independence Payment - PIP) or insurance, where evidence from medical records is required.
The disconnect between recorded data and reality
A fundamental challenge in MS care, exacerbated by record errors, is the potential disconnect between the data routinely captured in clinical records and the patient's subjective, lived experience of the condition. MS symptoms are notoriously diverse and often include highly impactful but subjective issues like profound fatigue, cognitive difficulties ('brain fog'), chronic pain, depression, and anxiety.
Traditional clinical records, however, often prioritise objective, clinician-measured data points such as EDSS scores, confirmed relapse counts, or MRI findings. While Patient-Reported Outcome Measures (PROs) are increasingly recognised as valuable for capturing the patient's perspective on symptoms and quality of life, their systematic collection, integration into standard NHS records, and accurate coding may be inconsistent. There may be a lack of standardised coding options within EHR systems for nuances of subjective symptoms, such as fatigue or cognitive impairment.
Record errors – particularly omissions or inaccuracies in free-text notes where subjective symptoms might be described – further degrade the already limited capture of the patient's full symptom burden. A clinician relying primarily on the structured, coded data within an incomplete or inaccurate record may consequently underestimate the actual impact of symptoms, such as fatigue or pain, on the patient's daily life and overall well-being.
As a result, clinical management decisions – regarding symptomatic treatments, referrals to rehabilitation services (such as physiotherapy or occupational therapy), psychological support, or even adjustments to disease-modifying therapies (DMTS) – may be based on an incomplete or skewed picture of the patient's actual condition and priorities. This can lead to suboptimal care that fails to adequately address the issues most significantly affecting the patient's quality of life, even if objective markers like relapse rate appear stable according to the record. Bridging this gap requires not only better integration of PROs but also ensuring the fundamental accuracy and completeness of all recorded information.
Systemic factors
The prevalence and impact of patient record errors in MS care are influenced by broader systemic challenges within the NHS, alongside various national standards and initiatives aimed at improvement. Several underlying factors contribute to the difficulties in maintaining high-quality patient records:
Resource Pressures: Persistent pressures on NHS resources, including high clinical workloads, significant staffing shortages (specifically for neurologists and MS nurses), and ongoing funding constraints, inevitably impact the time and resources available for meticulous record keeping. These pressures contribute to staff burnout, further increasing the risk of errors. A lack of funding for service development is a significant concern, potentially hindering investments in better data systems or staffing levels necessary for optimal record management.
Legacy systems and interoperability gaps: The NHS landscape is characterised by a multitude of different EHR/EPR systems across various Trusts and primary care settings, many of which were implemented without mandated interoperability standards. This historical lack of standardisation has resulted in persistent gaps in data sharing, making it difficult to achieve a seamless, integrated view of a patient's record across their entire care pathway. While the ambition for interoperability is clear in NHS policy, overcoming these legacy issues and achieving truly seamless data flow remains a significant technical and logistical challenge.
Data quality culture and training: Consistent, high-quality training on the use of standardised clinical terminologies, such as SNOMED CT, is essential but is not implemented or reinforced. Furthermore, clinicians may not always fully appreciate the importance of accurate data entry and coding for secondary uses, such as clinical audit, service planning, and research, beyond immediate direct care. Concerns have also been raised by primary care staff about the impact of increased patient access to records on their note-writing practices and the need for additional training to adapt.
Complexity of MS data: The inherent complexity and longitudinal nature of MS itself pose significant challenges for record-keeping. Capturing the nuances of fluctuating symptoms, subtle changes in disability, diverse PROs, complex DMT regimens, and input from multiple disciplines requires robust and well-designed record systems and diligent data entry.
I would be interested to hear if any of you have issues with errors in your medical records and how it has impacted your MS diagnosis and care. Please share your experiences. Thanks.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
It’s eye-opening - and safe to assume the actual prevalence is much higher. Not many people have the time, attention or motivation to review their medical records. The figure reported today likely represents significant under-reporting. I’d hazard a guess that a systematic review of records would find that the majority include frequent inaccuracies by multiple clinicians.
For me, there’s a deeper level overlap with some of the issues that came up last week when you responded to the patient angry at the cost to his health of poor care. I.e., lack of attention, consideration and consistent standards. Also, it’s clear that doctors aren’t listening closely when patients communicate - or they’re presuming to override what they’re told. At the worse end of medical practice, the inaccuracies deliberately conceal mistakes, shifting responsibility snd accountability rather than owning it.
The thing is, not many doctors are as highly and sincerely motivated as you. You’re shocked by these things because you assume your peers are working to the same motivations and standards that you are. Many are not, which is why stories like this surprise few patients who have long-term and multiple interactions with healthcare practitioners.
All of your points about the systemic issues are fair and important - but medical culture is part of the problem too.
Culture change is difficult and the systemic drivers aren’t going to get easier in the near future, so for me this is an opportunity area for AI.
Tech exists now that could be easily adapted to accurately take and record medical history - for example through standard written or audio questions in advance of appointments. I think it’d also be worth considering what options exist for consensual audio recording of appointments for the same purpose, using AI tech to accurately record key data - also saving clinicians time and bureaucracy.
All so true. I find I have to act as project manager of my chronic conditions. Having been diagnosed with MS for 20 years I’ve become quite used to it -but when dealing with MS and having to manage all its administration it’s exhausting. Three points. 1. We’ve just moved and transferring healthcare within the NHS is draining -7 months in and my DMT prescription ( despite much work on my part) is still not transferred. 2. NHS IT systems do not ‘.talk’ to each other and neither does primary or secondary care. 3. An example -my GP didn’t know I was on Kesimpta and therefore that I was immunosuppressive..a fairly fundamental flaw..