Clinical and Translational Oncology (2021) 23:2099–2108 https://doi.org/10.1007/s12094-021-02614-9 RESEARCH ARTICLE Electronic health records and patient registries in medical oncology departments in Spain N. Ribelles1 · I. Alvarez‑Lopez2 · A. Arcusa3 · J. I. Chacon4 · J. de la Haba5 · J. García‑Corbacho6 · J. Garcia‑Mata7 · C. Jara8 · J. M. Jerez9 · M. Lázaro‑Quintela10 · L. Leon‑Mateos11 · N. Ramirez‑Merino12 · A. Tibau13 · A. Garcia‑Palomo14 Received: 5 February 2021 / Accepted: 30 March 2021 / Published online: 17 April 2021 © The Author(s) 2021 Abstract Purpose We aimed to evaluate the current situation of electronic health records (EHRs) and patient registries in the oncol- ogy departments of hospitals in Spain. Methods This was a cross-sectional study conducted from December 2018 to September 2019. The survey was designed ad hoc by the Outcomes Evaluation and Clinical Practice Section of the Spanish Society of Medical Oncology (SEOM) and was distributed to all head of medical oncology department members of SEOM. Results We invited 148 heads of oncology departments, and 81 (54.7%) questionnaires were completed, with representation from all 17 Spanish autonomous communities. Seventy-seven (95%) of the respondents had EHRs implemented at their hospitals; of them, over 80% considered EHRs to have a positive impact on work organization and clinical practice, and 73% considered that EHRs improve the quality of patient care. In contrast, 27 (35.1%) of these respondents felt that EHRs worsened the physician–patient relationship and conveyed an additional workload (n = 29; 37.6%). Several drawbacks in the implementation of EHRs were identified, including the limited inclusion of information on both outpatients and inpatients, information recorded in free text data fields, and the availability of specific informed consent. Forty-six (56.7%) respondents had patient registries where they recorded information from all patients seen in the department. Conclusion Our study indicates that EHRs are almost universally implemented in the hospitals surveyed and are considered to have a positive impact on work organization and clinical practice. However, EHRs currently have several drawbacks that limit their use for investigational purposes. Clinical trial registration Not applicable Keywords Electronic health records · Patient registries · Medical oncology · Work organization · Clinical practice · Clinical research Introduction adherence, and reducing medication errors and drug-related adverse events [2]. Although the implementation of EHRs According to the International Organization for Standardiza- has not been shown to reduce mortality [2, 3], some studies tion (ISO) [1], an electronic health record (EHR) is “a repos- have demonstrated that they can moderately improve mor- itory of patient data in digital form, stored and exchanged bidity outcomes [3]. securely, and accessible by multiple authorized users. It con- EHRs may also be an important tool for clinical tains retrospective, concurrent, and prospective information, research. Within the oncology field, they have been used and its primary purpose is to support continuing, efficient for evaluating the cancer risk associated with some treat- and quality integrated health care”. A previous systematic ments [4, 5] and to create predictive models [6, 7] that review has shown that EHRs improve the quality of health allow personalized care and to evaluate the quality of can- care by reducing documentation time, increasing guideline cer care [8], to cite some examples. In clinical trials, EHRs facilitate accessibility to medical records and thus speed up the identification of potential participants [9, 10]. They * N. Ribelles nuria.ribelles.sspa@juntadeandalucia.es also facilitate the capture of electronic data in an auto- mated way [11], helping to monitor the review of source Extended author information available on the last page of the article 13 Vol.:(0123456789) 2100 Clinical and Translational Oncology (2021) 23:2099–2108 data, such as EHR, and thus avoid difficulties in interpret- The survey ing the handwritten characters of doctors. In addition, the availability of electronic tools to find specific words in The survey was designed ad hoc by 11 members (NR, long text and even potentially allow remote monitoring, AGP, IAL, AAL, JGM, JHR, CJS, MLQ, LLM, NRM and which recently became a major issue during the pandemic, ATM) of the Outcomes Evaluation and Clinical Practice is useful. Additionally, EHRs can be a source for select- Section of the SEOM, which in turn supported this study. ing patients treated with a contemporary standard of care The survey was distributed by email to all SEOM members as an external control to interpret the efficacy observed with the category of head of medical oncology department in early phase single-group clinical trials [12]. Early in with a cover letter explaining the objectives of the study. drug development, EHRs may be used to identify potential Three reminders were sent via email. Finally, the members candidates for the treatment of cancer by analyzing the of the Executive Committee of this section of SEOM tried effects on survival of noncancer drugs in patients with to contact the nonresponders directly via email or phone. cancer—so-called drug repurposing [13, 14]. EHRs are The surveyed comprised 17 questions that could be also an important source for obtaining real-world evidence grouped into the following sections: for the effects of interventions [15]. In this regard, the American Society of Clinical Oncology in collaboration 1. Practice identification and age, position and experience with the MITRE Corporation (a private, not-for-profit of the health professional who filled out the question- company providing engineering and technical guidance naire (1 question). for the federal government in the US) launched an initia- 2. Data on the availability of patient registries in the tive in 2019, the mCODE (Minimal Common Oncology department, type of registries, and need for a national Data Elements), for establishing a core set of structured cancer registry (3 questions). data elements for oncology EHRs that would enable the 3. Data on the availability of an electronic prescription sys- treatment of every cancer patient to contribute to compara- tem and its characteristics (2 questions). tive effectiveness analysis [16, 17]. 4. Data on EHRs (11 questions): There is no information on the availability and char- a. EHR availability acteristics of EHRs in oncology at the country level in b. Length of time that EHR has been available Spain. Therefore, the Outcomes Evaluation and Clini- c. It is considered of interest in implementing EHR in cal Practice Section of the Spanish Society of Medical the department if not available Oncology (SEOM) conducted this survey with the aim d. What are the characteristics of the information of evaluating the degree of implementation of EHRs by included in EHRs? the medical oncology departments of hospitals in Spain, e. In which format the data are recorded describing the situation regarding cancer registries among f. Degree of agreement on the impact of the avail- those departments, and assessing their willingness to ability of an EHR on several issues (measures on a share patient data. 3-point Likert scale) g. Availability of tools for extracting data from EHR h. Possibility of accessing diagnostic tests through the Subjects and methods EHR i. Compatibility of the EHR for use in clinical trials Study design j. Availability of informed consent for using patient information from the EHR This was a cross-sectional study that was undertaken from k. Willingness to share information from the EHRs December 2018 to September 2019. Since the survey with other investigators. was addressed to health professionals and no individual patient datum was recorded, evaluation by the ethics com- The complete questionnaire is available as Supplemen- mittee was not required. Participants were informed of tary Information, both in the English and Spanish versions. the objectives of the survey and that their participation was not completely anonymous. That is, centers were identified in the questionnaire, but the health profes- Statistical analysis sional reporting the information was not. They were also informed that the results of the survey would be reported We used a convenience sample; therefore, we did not per- in an aggregate manner. form any sample size calculations. 13 Clinical and Translational Oncology (2021) 23:2099–2108 2101 Our data are essentially descriptive. We used absolute this regard among the AACCs with the largest number of and relative frequencies to present qualitative variables. participant centers, except for Valencia, who reported that All analyses were performed using Microsoft Excel 365. only 3 out of the 9 (33.3%) participant hospitals had a patient registry/database (Fig. 1). There were only five AACCs in which 100% of the responders registered all patients treated Results in their services (Asturias, Castilla-León, Ceuta, La Rioja and Navarra). Additionally, 22 (27.1%) respondents reported Response rate and characteristics the presence of other registries conducted by some of the of the respondents medical staff of the department. The information recorded in a patient registry/database was the type of cancer (n = 73, We invited 148 heads of oncology departments through- 90.1%), stage (n = 55, 67.9%), date of diagnosis (n = 51, out Spain, and after reminders, 81 (54.7%) answered the 62.9%), type of treatment received (n = 46, 56.7%) and date questionnaires. All 17 Spanish autonomous communities and clinical status at the last follow-up visit (n = 27, 33.3%). (AACC) and 1 of the 2 Spanish autonomous cities were rep- All but 2 of the respondents (97.5%) considered that there resented by at least one hospital. However, hospitals from was a need to create a national registry of cancer patients. 5 AACCs represented 64.1% of the responses: Catalonia (n = 14, 17.5%), Madrid (n = 11, 13.6%), Andalusia (n = 11, Availability of an electronic prescription system 13.6%), Valencia (n = 9, 11.1%), and Galicia (n = 7, 8.6%) and its characteristics (Table 1). Questionnaires were completed by the head of the department (n = 54, 66.6%), followed by the head of sec- Seventy-six out of the 81 participants (93.8%) reported hav- tion (n = 21, 25.9%) and the senior registrar (n = 6, 7.4%). ing an electronic prescription system. Of those with the elec- Seventy-three (90.1%) of the respondents were older than tronic prescription system, 42 (55.2%) had direct access to 45 years, and 66 (81.4%) had professional experience greater the electronic prescription system from the EHR, 33 (43.4%) than 20 years. could directly obtain information about the prescribed treat- ments, 30 (39.4%) could request that information through Availability and characteristics of patient registries the Pharmacy Department and 3 (3.9%) could not obtain that information. Forty-six (56.7%) of the centers had a register or database where the information of all patients attending the clinical Electronic health record offices was recorded. There were no relevant differences in Seventy-seven (95.1%) of the respondents had EHRs imple- mented at their hospitals, and of them, 63 (81.8%) had used Table 1  Number of hospitals Spanish autono- N that tool for a period longer than 5 years. All four respond- with answered surveys mous communities ents without an EHR implemented at their center considered that, currently, the EHR is an essential tool. Andalusia 11 (13.5%) In over 90.9% of cases, the EHR was designed and main- Aragon 3 (3.7%) tained by the AACC Health Service, but only one-third Asturias 1 (1.2%) had specific templates for recording information (Fig. 2). Balearic Islands 2 (2.4%) In 57.1% of the centers, the EHR includes information on Basque Country 3 (3.7%) outpatient consultation, as well as on hospitalized patients. Canary Islands 1 (1.2%) Data from the EHR are recorded in a structured manner (i.e., Cantabria 1 (1.2%) using drop-down lists) in 10.4% of the centers, while 48.1% Castile and Lion 4 (4.9%) of them use free text data fields, and 41.5% combine the Castilla La Mancha 4 (4.9%) two systems. Catalonia 14 (17.3%) In the survey, several questions were included to determine Ceuta 1 (1.2%) opinions about different aspects related to the use of EHRs. Estremadura 3 (3.7%) More than eighty percent considered that its use improves Galicia 7 (8.6%) access to patient information (68; 88.3%), that it is essen- Madrid 11 (13.5%) tial to analyze health outcomes (66; 85.7%) and that it favors Murcia 3 (3.7%) uniformity of work by all physicians (64; 83.1%). Between Navarre 1 (1.2%) seventy and eighty percent supported the value of EHR as an Rioja 2 (2.4%) essential source of information to improve knowledge (61; Valencia 9 (11.1%) 79.2%) and to progress in our work system (58; 75.3%). In 13 2102 Clinical and Translational Oncology (2021) 23:2099–2108 Fig. 1  Availability of patient registries by autonomous communities addition, the use of EHRs allows us to easily obtain updated Overall, nearly 85% of the respondents were willing to information about patient status (58; 75.3%) and contributes share data from EHRs within the frame of a project spon- to improving the quality of patient care (56: 72.7%). However, sored by SEOM and considered that sharing data might have there was no such clear agreement on whether use of the EHR a positive impact on obtaining information on health out- worsened the physician–patient relationship (yes 27; 35.1% vs comes from cancer patients and would allow one to obtain no 31; 40.2%) or whether it involved an additional workload information on the prevalence and incidence of cancer (yes 29; 37.6% vs no 34; 44.1%) (Fig. 3). (Fig. 5). Regarding extraction of data from the EHRs (Fig. 4), 24 (31.2%) respondents reported that they could not extract information. Only 9 (11.7%) of the respondents could Discussion directly extract information from the EHRs, and 23 (29.8%) had to request the information from those responsible for the Our study indicates that EHRs are almost universally imple- EHRs within the AACC Health Service. Only 32 (41.5%) mented in the hospitals surveyed and are considered to have respondents could directly access information from diag- a positive impact on work organization and clinical prac- nostic tests from the EHR. Forty-eight (62.3%) respondents tice. However, there are several drawbacks to how EHRs are thought that their EHR met the needed features to be consid- implemented that limit optimal use for both clinical practice ered a proper EHR by the sponsors of clinical trials. Thirty- and clinical research. five respondents (45.4%) reported that their patients signed According to our survey, 95.1% of the participating hos- a general informed consent form for the administration of pitals had implemented an EHR, a figure that is entirely treatments in which the use of their data collected in the consistent with the 93.3% coverage of the National Health EHR was also authorized. Moreover, sixteen other respond- System Electronic Health Records Project reported by the ents (20.8%) pointed out that their patients signed a specific Spanish Ministry of Health as stated in the last report of consent form to authorize the use of their data. October 2020 [18]. Those hospitals where an EHR is not yet 13 Clinical and Translational Oncology (2021) 23:2099–2108 2103 Fig. 2  Characteristics of the electronic health record available considered it an essential tool. Most respondents are still many drawbacks in the implementation of EHRs believe that the availability of EHRs has a positive impact in Spain that limit their use for research purposes, includ- on work organization and clinical practice and agree that it ing clinical trials. Only 57.1% of centers have an EHR that improves the quality of patient care. However, it is impor- includes information on both outpatients and inpatients. tant to note that 35.1% of surveyed oncologists think that Almost half of centers use an EHR where the information is the EHR may interfere with the doctor–patient relation- recorded in free text data fields. Approximately two-thirds ship. This concern is somehow justified, as the use of EHRs of respondents either cannot extract information from the may disrupt communication (e.g., interrupted speech), and EHR or must request the desired information from the per- this perception of a negative impact on the patient–doctor son responsible for this system at the AACC Health System. relationship has been reported previously [19]. However, a We did not include questions in our survey regard- systematic review found that EHRs produce no change in ing the specific content of the EHR. The ASCO project patient satisfaction or patient–doctor communication [20]. mCODE recommends core elements be included for Our study also shows that 37.6% of the centers surveyed cancer research treatment, including patient information consider that EHRs increase workload. Studies conducted in (demographics, comorbid conditions and performance sta- primary care show that, in fact, the implementation of EHRs tus), cancer characteristics, genomics information, labora- can improve productivity/efficiency in physician workloads tory and vital sign information, including tumor markers, [21]. Improving the usability of the EHR may decrease this cancer treatment information, and cancer disease status perception of increased workload [22]. [16]. We think this information could only be obtained in Although two-thirds of respondents reported that their our setting by designing and implementing the appropriate EHRs meet the needed characteristics for being considered a tools that allow us to extract and analyze this informa- proper EHR by sponsors of clinical trials, in our view, there tion from the content of EHRs. Fortunately, over 80% of 13 2104 Clinical and Translational Oncology (2021) 23:2099–2108 Fig. 3  Impact of the electronic health record respondents were willing to share their data, but this could recorded the type of treatment received, and only 33.3% be hampered by the fact that it is not possible to share recorded the clinical status at the last follow-up. This situ- the data contained in the EHRs from the health systems ation is further complicated by the fact that despite the from different AACCs. Therefore, by involving additional availability of an electronic prescription system in 93.8% stakeholders (i.e., pharmacists, hospital management, and of centers, 43.3% could not directly obtain information on scientific societies, such as SEOM, among others), similar prescribed treatments. projects could be implemented in Spain in the future. A limitation of our survey is the relatively low rate of Nearly 84% of the centers surveyed had some type of participants, since only 54.7% of the hospitals that were con- patient register or database, and the registry included tacted answered the questions proposed. Therefore, despite information on all patients attended in 56.7% of the sur- the involvement of centers from all except one administra- veyed hospitals. It is possible that this high number of tive territory of Spain, our results cannot be considered centers with registries was facilitated by the high use representative of the situation at a national level. Neverthe- of EHRs. In the United States, it has been reported that less, the high percentages of agreement obtained in certain the availability of EHRs facilitates the development and responses supports the representativeness of our results. It is implementation of patient registries [23]. The information also possible that the participants in our survey were those included in the registries from our survey is limited, espe- more interested in the use of EHRs, and their opinion could cially for evaluating treatment outcomes, since only 56.7% be biased to a positive perception of the usefulness of EHRs. 13 Clinical and Translational Oncology (2021) 23:2099–2108 2105 Fig. 4  Information extraction from the electronic health record However, the importance of EHRs in oncology research is the oncologists surveyed consider it necessary to create a indubitable [23, 24], especially with the increasing relevance National Cancer Registry like those available in most coun- of real-world data [25]. tries of the same level. According to data obtained by our national survey, the The development and implementation of a National Can- implementation and use of EHRs in Spain appears to have cer Registry first and a national EHR in the second should a wide and extensive distribution. However, the EHR’s reli- be an objective of the health authorities, using consensus as ance on seventeen different healthcare systems results in a way to establish what collected data is considered essen- several notable weaknesses. Information systems are not tial. Of course, a national oncology information system of compatible with each other and do not always collect the these characteristics should have the appropriate tools to same data. Therefore, it is not possible in any way to obtain extract data and health outcomes. There is no doubt that information for joint analysis of large-scale data or to com- explicit support and legal coverage from health authorities pare health outcomes between hospitals or autonomous com- are essential for the implementation of such an information munities. Furthermore, in most EHRs, it is not possible to system. However, the technology necessary for its develop- obtain or analyze valuable health outcomes. ment could come from other collaborative sources of the On the other hand, the use of patient registries is still less academic and university environment. implemented. Not all medical oncology departments have Finally, it cannot be ignored that analysis of the data col- registries of the patients they attend, and if they do, they do lected in an information system of such characteristics would not always include all their patients or collect enough data. allow planning the distribution of available resources for the In this sense, it should be highlighted that practically all of care of cancer patients in the most efficient way. 13 2106 Clinical and Translational Oncology (2021) 23:2099–2108 Fig. 5  Opinion on sharing patient data from EHRs Supplementary Information The online version contains supplemen- Declarations tary material available at https://d​ oi.o​ rg/1​ 0.1​ 007/s​ 12094-0​ 21-0​ 2614-9. Conflict of interest The authors reported no conflict of interest in relation Acknowledgements The authors acknowledge the interest and effort to this manuscript. of the participants in answering the survey questionnaire. The authors would like to thank Fernando Rico-Villademoros (COCIENTE SL, Ethics approval This study did not involve the participation of patients; Madrid, Spain) for his editorial assistance in the preparation of this therefore, according to local regulations, ethics approval was not manuscript; his participation has been funded by the Spanish Society of required. Medical Oncology. The authors sincerely appreciate the participation of all medical oncologists who answered the survey. Informed consent This study did not involve the participation of patients; therefore, informed consent was not required. Author contributions Study concepts: NR, AGP; study design: NR, IAL, AA, JH, JGM, CJ, ML-Q, LL-M, NR-M, AT, AG-P; data acqui- sition: NR, IAL, AA, JH, JGM, CJ, ML-Q, LL-M, NR-M, AT, AG-P; Open Access This article is licensed under a Creative Commons Attri- data analysis and interpretation: NR, IAL, AA, JH, JGM, CJ, ML-Q, bution 4.0 International License, which permits use, sharing, adapta- LL-M, NR-M, AT, AG-P; statistical analysis: NR, IAL, AA, JH, JGM, tion, distribution and reproduction in any medium or format, as long CJ, ML-Q, LL-M, NR-M, AT, AG-P; manuscript preparation:NR, IAL, as you give appropriate credit to the original author(s) and the source, JG-C, LL-M, AT, AG-P; manuscript review: NR, IAL, AA, JICH, JH, provide a link to the Creative Commons licence, and indicate if changes JG-C, JG-M, CG, JMJ, ML-Q, LL-M, NR-M, AT, AG-P. were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated Funding This research was funded by the Spanish Society of Medical otherwise in a credit line to the material. If material is not included in Oncology. the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will 13 Clinical and Translational Oncology (2021) 23:2099–2108 2107 need to obtain permission directly from the copyright holder. To view a 12. Carrigan G, Whipple S, Capra WB, Taylor MD, Brown JS, Lu copy of this licence, visit http://​creat​iveco​mmons.​org/​licen​ses/​by/4.​0/. M, Arnieri B, Copping R, Rothman KJ. Using electronic health records to derive control arms for early phase single-arm lung cancer trials: proof-of-concept in randomized controlled trials. Clin Pharmacol Ther. 2020;107:369–77. References 13. 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Inform. 2020;4:201–9. 13 2108 Clinical and Translational Oncology (2021) 23:2099–2108 Authors and Affiliations N. Ribelles1 · I. Alvarez‑Lopez2 · A. Arcusa3 · J. I. Chacon4 · J. de la Haba5 · J. García‑Corbacho6 · J. Garcia‑Mata7 · C. Jara8 · J. M. Jerez9 · M. Lázaro‑Quintela10 · L. Leon‑Mateos11 · N. Ramirez‑Merino12 · A. Tibau13 · A. Garcia‑Palomo14 1 8 Medical Oncology Intercenter Unit, Regional and Virgen Oncology Department, Hospital Universitario Fundación de la Victoria University Hospitals, IBIMA, Hospital Alcorcón, Madrid, Spain Universitario Virgen de la Victoria, Campus Teatinos s/n., 9 Department of Languages and Computer Science, 29010 Málaga, Spain E.T.S.I. Ingenería Informática, University of Málaga, 2 Medical Oncology Department, Hospital Universitario Málaga, Spain Donostia-BioDonostia, Donostia, Gipuzkoa, Spain 10 Medical Oncology Department, Hospital Álvaro Cunqueiro, 3 Oncology Department, Consorci Sanitari de Terrassa, Vigo, Spain Barcelona, Spain 11 Medical Oncology Department, Complexo Hospitalario 4 Medical Oncology Department, Hospital Virgen de la Salud, Universitario de Santiago de Compostela, Health Research Toledo, Spain Institute of Santiago (IDIS), Santiago de Compostela, Spain 5 12 Medical Oncology Department, Hospital Universitario Reina Oncología Médica, Hospital Universitario Infanta Elena, Sofía, Instituto de Investigación Biomédica de Córdoba Madrid, Spain (IMIBIC), Córdoba, Spain 13 Medical Oncology Department, Hospital de la Santa Creu i 6 Medical Oncology Department, Hospital Clinic/IDIBAPs, Sant Pau, Barcelona, Spain Barcelona, Spain 14 Medical Oncology Department, Complejo Asistencial 7 Medical Oncology Department, Complexo Hospitalario Universitario de León, Instituto de Biomedicina (IBIOMED), Universitario de Ourense, Ourense, Spain León, Spain 13