Electronic health records to facilitate clinical research

Clinical Research in Cardiology - Tập 106 Số 1 - Trang 1-9 - 2017
Martín Cowie1, Juuso Blomster2, Lesley H. Curtis3, Sylvie Duclaux4, Ian Ford5, Fleur Fritz6, Samantha Goldman7, Salim Janmohamed8, Jörg Kreuzer9, Mark Leenay10, Alexander Michel11, Seleen Ong12, Jill P. Pell13, Mary Southworth14, Wendy Gattis Stough15, Martin Thoenes16, Faı̈ez Zannad17, Andrew Zalewski18
1National Heart and Lung Institute, Imperial College London, Royal Brompton Hospital, Sydney Street, London, SW3 6HP, UK
2Astra Zeneca R&D, Molndal, Sweden
3Duke Clinical Research Institute, Durham, NC, USA
4Servier, Paris, France
5Robertson Centre for Biostatistics, University of Glasgow, Glasgow, UK
6University of Münster, Münster, Germany
7Daiichi-Sankyo, London, UK
8GlaxoSmithKline, Stockley Park, UK
9Boehringer-Ingelheim, Pharma GmbH & Co KG, Ingelheim, Germany
10Optum International, London, UK
11Bayer Pharma, Berlin, Germany
12Pfizer Ltd, Surrey, UK
13Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK
14Food and Drug Administration, Silver Spring, MD, USA
15Campbell University College of Pharmacy and Health Sciences, Campbell, NC, USA
16Edwards Lifesciences, Nyon, Switzerland.
17INSERM, Centre d’Investigation Clinique 9501 and Unité 961, Centre Hospitalier Universitaire, Nancy, France
18Glaxo Smith Kline, King of Prussia, Pennsylvania, USA

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Jackson N, Atar D, Borentain M, Breithardt G, van Eickels M, Endres M, Fraass U, Friede T, Hannachi H, Janmohamed S, Kreuzer J, Landray M, Lautsch D, Le Floch C, Mol P, Naci H, Samani N, Svensson A, Thorstensen C, Tijssen J, Vandzhura V, Zalewski A, Kirchhof P (2016) Improving clinical trials for cardiovascular diseases: a position paper from the Cardiovascular Roundtable of the European Society of Cardiology. Eur Heart J 37:747–754

Eisenstein EL, Collins R, Cracknell BS, Podesta O, Reid ED, Sandercock P, Shakhov Y, Terrin ML, Sellers MA, Califf RM, Granger CB, Diaz R (2008) Sensible approaches for reducing clinical trial costs. Clin Trials 5:75–84

Denaxas SC, Morley KI (2015) Big biomedical data and cardiovascular disease research: opportunities and challenges. European Heart Journal - Quality of Care and Clinical Outcomes 1:9–16

Hayrinen K, Saranto K, Nykanen P (2008) Definition, structure, content, use and impacts of electronic health records: a review of the research literature. Int J Med Inform 77:291–304

Appari A, Eric JM, Anthony DL (2013) Meaningful use of electronic health record systems and process quality of care: evidence from a panel data analysis of U.S. acute-care hospitals. Health Serv Res 48:354–375

Blumenthal D, Tavenner M (2010) The “meaningful use” regulation for electronic health records. N Engl J Med 363:501–504

Roumia M, Steinhubl S (2014) Improving cardiovascular outcomes using electronic health records. Curr Cardiol Rep 16:451

Doods J, Botteri F, Dugas M, Fritz F (2014) A European inventory of common electronic health record data elements for clinical trial feasibility. Trials 15:18

Collins FS, Hudson KL, Briggs JP, Lauer MS (2014) PCORnet: turning a dream into reality. J Am Med Inform Assoc 21:576–577

James S, Rao SV, Granger CB (2015) Registry-based randomized clinical trials–a new clinical trial paradigm. Nat Rev Cardiol 12:312–316

Krumholz HM, Normand SL, Wang Y (2014) Trends in hospitalizations and outcomes for acute cardiovascular disease and stroke, 1999-2011. Circulation 130:966–975

Hlatky MA, Ray RM, Burwen DR, Margolis KL, Johnson KC, Kucharska-Newton A, Manson JE, Robinson JG, Safford MM, Allison M, Assimes TL, Bavry AA, Berger J, Cooper-DeHoff RM, Heckbert SR, Li W, Liu S, Martin LW, Perez MV, Tindle HA, Winkelmayer WC, Stefanick ML (2014) Use of Medicare data to identify coronary heart disease outcomes in the Women’s Health Initiative. Circ Cardiovasc Qual Outcomes 7:157–162

Chung SC, Gedeborg R, Nicholas O, James S, Jeppsson A, Wolfe C, Heuschmann P, Wallentin L, Deanfield J, Timmis A, Jernberg T, Hemingway H (2014) Acute myocardial infarction: a comparison of short-term survival in national outcome registries in Sweden and the UK. Lancet 383:1305–1312

Brindis RG, Fitzgerald S, Anderson HV, Shaw RE, Weintraub WS, Williams JF (2001) The American College of Cardiology-National Cardiovascular Data Registry (ACC-NCDR): building a national clinical data repository. J Am Coll Cardiol 37:2240–2245

Scholte op Reimer W, Gitt A, Boersma E, Simoons Me (2006) Cardiovascular diseases in Europe. Euro Heart Survey−2006. European Society of Cardiology, . Sophia Antipolis

Ferrari R (2010) EURObservational research programme. Eur Heart J 31:1023–1031

Smaha LA (2004) The American Heart Association Get With The Guidelines program. Am Heart J 148:S46–S48

Krumholz HM (2014) Big data and new knowledge in medicine: the thinking, training, and tools needed for a learning health system. Health Aff (Millwood) 33:1163–1170

Wood R, Clark D, King A, Mackay D, Pell J (2013) Novel cross-sectoral linkage of routine health and education data at an all-Scotland level: a feasibility study. Lancet 382(Supplement 3):S10

Cederholm S, Hill G, Asiimwe A, Bate A, Bhayat F, Persson BG, Bergvall T, Ansell D, Star K, Noren GN (2015) Structured assessment for prospective identification of safety signals in electronic medical records: evaluation in the health improvement network. Drug Saf 38:87–100

Trifiro G, Fourrier-Reglat A, Sturkenboom MC, Diaz AC, Van Der Lei J (2009) The EU-ADR project: preliminary results and perspective. Stud Health Technol Inform 148:43–49

Eichler HG, Pignatti F, Flamion B, Leufkens H, Breckenridge A (2008) Balancing early market access to new drugs with the need for benefit/risk data: a mounting dilemma. Nat Rev Drug Discov 7:818–826

Goedecke T, Arlett P (2014) A Description of the European Network of Centres for pharmacoepidemiology and pharmacovigilance as a global resource for pharmacovigilance and pharmacoepidemiology. Mann’s pharmacovigilance. Wiley, New York, pp 403–408

Ball R, Robb M, Anderson SA, Dal Pan G (2016) The FDA’s sentinel initiative-A comprehensive approach to medical product surveillance. Clin Pharmacol Ther 99:265–268

Staffa JA, Dal Pan GJ (2012) Regulatory innovation in postmarketing risk assessment and management. Clin Pharmacol Ther 91:555–557

Peterson ED, Shah BR, Parsons L, Pollack CV Jr, French WJ, Canto JG, Gibson CM, Rogers WJ (2008) Trends in quality of care for patients with acute myocardial infarction in the National Registry of Myocardial Infarction from 1990 to 2006. Am Heart J 156:1045–1055

Chan PS, Maddox TM, Tang F, Spinler S, Spertus JA (2011) Practice-level variation in warfarin use among outpatients with atrial fibrillation (from the NCDR PINNACLE program). Am J Cardiol 108:1136–1140

Maddox TM, Chan PS, Spertus JA, Tang F, Jones P, Ho PM, Bradley SM, Tsai TT, Bhatt DL, Peterson PN (2014) Variations in coronary artery disease secondary prevention prescriptions among outpatient cardiology practices: insights from the NCDR (National Cardiovascular Data Registry). J Am Coll Cardiol 63:539–546

Jernberg T, Attebring MF, Hambraeus K, Ivert T, James S, Jeppsson A, Lagerqvist B, Lindahl B, Stenestrand U, Wallentin L (2010) The Swedish Web-system for enhancement and development of evidence-based care in heart disease evaluated according to recommended therapies (SWEDEHEART). Heart 96:1617–1621

Cleland JG, Swedberg K, Follath F, Komajda M, Cohen-Solal A, Aguilar JC, Dietz R, Gavazzi A, Hobbs R, Korewicki J, Madeira HC, Moiseyev VS, Preda I, van Gilst WH, Widimsky J, Freemantle N, Eastaugh J, Mason J (2003) The EuroHeart Failure survey programme: a survey on the quality of care among patients with heart failure in Europe. Part 1: patient characteristics and diagnosis. Eur Heart J 24:442–463

Nieminen MS, Brutsaert D, Dickstein K, Drexler H, Follath F, Harjola VP, Hochadel M, Komajda M, Lassus J, Lopez-Sendon JL, Ponikowski P, Tavazzi L (2006) EuroHeart Failure Survey II (EHFS II): a survey on hospitalized acute heart failure patients: description of population. Eur Heart J 27:2725–2736

Tofield A (2010) EURObservational research programme. Eur Heart J 31:1023–1031

McNamara RL, Herrin J, Bradley EH, Portnay EL, Curtis JP, Wang Y, Magid DJ, Blaney M, Krumholz HM (2006) Hospital improvement in time to reperfusion in patients with acute myocardial infarction, 1999 to 2002. J Am Coll Cardiol 47:45–51

Kopcke F, Trinczek B, Majeed RW, Schreiweis B, Wenk J, Leusch T, Ganslandt T, Ohmann C, Bergh B, Rohrig R, Dugas M, Prokosch HU (2013) Evaluation of data completeness in the electronic health record for the purpose of patient recruitment into clinical trials: a retrospective analysis of element presence. BMC Med Inform Decis Mak 13:37

Thadani SR, Weng C, Bigger JT, Ennever JF, Wajngurt D (2009) Electronic screening improves efficiency in clinical trial recruitment. J Am Med Inform Assoc 16:869–873

De Moor G, Sundgren M, Kalra D, Schmidt A, Dugas M, Claerhout B, Karakoyun T, Ohmann C, Lastic PY, Ammour N, Kush R, Dupont D, Cuggia M, Daniel C, Thienpont G, Coorevits P (2015) Using electronic health records for clinical research: the case of the EHR4CR project. J Biomed Inform 53:162–173

Fordyce CB, Roe MT, Ahmad T, Libby P, Borer JS, Hiatt WR, Bristow MR, Packer M, Wasserman SM, Braunstein N, Pitt B, DeMets DL, Cooper-Arnold K, Armstrong PW, Berkowitz SD, Scott R, Prats J, Galis ZS, Stockbridge N, Peterson ED, Califf RM (2015) Cardiovascular drug development: is it dead or just hibernating? J Am Coll Cardiol 65:1567–1582

New JP, Bakerly ND, Leather D, Woodcock A (2014) Obtaining real-world evidence: the Salford Lung Study. Thorax 69:1152–1154

Fleurence RL, Curtis LH, Califf RM, Platt R, Selby JV, Brown JS (2014) Launching PCORnet, a national patient-centered clinical research network. J Am Med Inform Assoc 21:578–582

Hernandez AF, Fleurence RL, Rothman RL (2015) The ADAPTABLE Trial and PCORnet: shining light on a new research paradigm. Ann Intern Med 163:635–636

Curtis LH, Brown J, Platt R (2014) Four health data networks illustrate the potential for a shared national multipurpose big-data network. Health Aff (Millwood) 33:1178–1186

Jha AK, DesRoches CM, Campbell EG, Donelan K, Rao SR, Ferris TG, Shields A, Rosenbaum S, Blumenthal D (2009) Use of electronic health records in U.S. hospitals. N Engl J Med 360:1628–1638

Hersh WR, Weiner MG, Embi PJ, Logan JR, Payne PR, Bernstam EV, Lehmann HP, Hripcsak G, Hartzog TH, Cimino JJ, Saltz JH (2013) Caveats for the use of operational electronic health record data in comparative effectiveness research. Med Care 51:S30–S37

Brennan L, Watson M, Klaber R, Charles T (2012) The importance of knowing context of hospital episode statistics when reconfiguring the NHS. BMJ 344:e2432

Green SM (2013) Congruence of disposition after emergency department intubation in the National Hospital Ambulatory Medical Care Survey. Ann Emerg Med 61:423–426

Weiskopf NG, Weng C (2013) Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. J Am Med Inform Assoc 20:144–151

Elnahal SM, Joynt KE, Bristol SJ, Jha AK (2011) Electronic health record functions differ between best and worst hospitals. Am J Manag Care 17:e121–e147

Flynn MR, Barrett C, Cosio FG, Gitt AK, Wallentin L, Kearney P, Lonergan M, Shelley E, Simoons ML (2005) The Cardiology Audit and Registration Data Standards (CARDS), European data standards for clinical cardiology practice. Eur Heart J 26:308–313

Simoons ML, van der Putten N, Wood D, Boersma E, Bassand JP (2002) The Cardiology Information System: the need for data standards for integration of systems for patient care, registries and guidelines for clinical practice. Eur Heart J 23:1148–1152

Sugarman J, Califf RM (2014) Ethics and regulatory complexities for pragmatic clinical trials. JAMA 311:2381–2382

Frobert O, Lagerqvist B, Olivecrona GK, Omerovic E, Gudnason T, Maeng M, Aasa M, Angeras O, Calais F, Danielewicz M, Erlinge D, Hellsten L, Jensen U, Johansson AC, Karegren A, Nilsson J, Robertson L, Sandhall L, Sjogren I, Ostlund O, Harnek J, James SK (2013) Thrombus aspiration during ST-segment elevation myocardial infarction. N Engl J Med 369:1587–1597

Hess CN, Rao SV, Kong DF, Aberle LH, Anstrom KJ, Gibson CM, Gilchrist IC, Jacobs AK, Jolly SS, Mehran R, Messenger JC, Newby LK, Waksman R, Krucoff MW (2013) Embedding a randomized clinical trial into an ongoing registry infrastructure: unique opportunities for efficiency in design of the Study of Access site For Enhancement of Percutaneous Coronary Intervention for Women (SAFE-PCI for Women). Am Heart J 166:421–428

Barry SJ, Dinnett E, Kean S, Gaw A, Ford I (2013) Are routinely collected NHS administrative records suitable for endpoint identification in clinical trials? Evidence from the West of Scotland Coronary Prevention Study. PLoS One 8:e75379