{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,3,26]],"date-time":"2025-03-26T17:59:14Z","timestamp":1743011954611,"version":"3.37.3"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2018,3,8]],"date-time":"2018-03-08T00:00:00Z","timestamp":1520467200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2018,3,8]],"date-time":"2018-03-08T00:00:00Z","timestamp":1520467200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["npj Prim Care Resp Med"],"abstract":"<jats:title>Abstract<\/jats:title><jats:p>There is growing awareness amongst healthcare planners, providers and researchers of the need to make better use of routinely collected health data by translating it into actionable information that improves efficiency of healthcare and patient outcomes. There is also increased acceptance of the importance of real world research that recruits patients representative of primary care populations and evaluates interventions realistically delivered by primary care professionals. The UNLOCK Group is an international collaboration of primary care researchers and practitioners from 15 countries. It has coordinated and shared datasets of diagnostic and prognostic variables for COPD and asthma to answer research questions meaningful to professionals working in primary care over a 6-year period. Over this time the UNLOCK Group has undertaken several studies using data from unselected primary care populations from diverse contexts to evaluate the burden of disease, multiple morbidities, treatment and follow-up. However, practical and structural constraints have hampered the UNLOCK Group\u2019s ability to translate research ideas into studies. This study explored the constraints, challenges and successes experienced by the UNLOCK Group and its participants\u2019 learning as researchers and primary care practitioners collaborating to answer primary care research questions. The study identified lessons for future studies and collaborations that require data sharing across borders. It also explored specific challenges to fostering the exchange of primary care data in comparison to other datasets such as public health, prescribing or hospital data and mechanisms that may be used to overcome these.<\/jats:p>","DOI":"10.1038\/s41533-018-0075-9","type":"journal-article","created":{"date-parts":[[2018,3,2]],"date-time":"2018-03-02T17:06:41Z","timestamp":1520010401000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Fostering the exchange of real world data across different countries to answer primary care research questions: an UNLOCK study from the IPCRG"],"prefix":"10.1038","volume":"28","author":[{"given":"Liza","family":"Cragg","sequence":"first","affiliation":[]},{"given":"Si\u00e2n","family":"Williams","sequence":"additional","affiliation":[]},{"given":"Thys","family":"van der Molen","sequence":"additional","affiliation":[]},{"given":"Mike","family":"Thomas","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6459-7908","authenticated-orcid":false,"given":"Jaime","family":"Correia de Sousa","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8607-9199","authenticated-orcid":false,"given":"Niels H.","family":"Chavannes","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2018,3,8]]},"reference":[{"key":"75_CR1","doi-asserted-by":"crossref","first-page":"47","DOI":"10.1038\/pcrj.2001.29","volume":"10","author":"T Van Der Molen","year":"2001","unstructured":"Van Der Molen, T. & Price, D. The Founding of the International Primary Care Respiratory Group (IPCRG). Prim. Care Respir. J. 10, 47\u201350 (2001).","journal-title":"Prim. Care Respir. J."},{"key":"75_CR2","doi-asserted-by":"publisher","first-page":"S1","DOI":"10.4104\/pcrj.2010.00021","volume":"19","author":"H Pinnock","year":"2010","unstructured":"Pinnock, H. et al The International Primary Care Respiratory Group (IPCRG) Research Needs Statement 2010. Prim. Care Respir. J. 19, S1\u201320 (2010).","journal-title":"Prim. Care Respir. J."},{"key":"75_CR3","doi-asserted-by":"publisher","first-page":"19","DOI":"10.4104\/pcrj.2012.00006","volume":"21","author":"H Pinnock","year":"2012","unstructured":"Pinnock, H. et al. Prioritising the respiratory research needs of primary care: the International Primary Care Respiratory Group (IPCRG) e-Delphi exercise. Prim. Care Respir. J. Mar. 21, 19\u201327 (2012).","journal-title":"Prim. Care Respir. J. Mar."},{"key":"75_CR4","doi-asserted-by":"publisher","first-page":"408","DOI":"10.4104\/pcrj.2010.00084","volume":"19","author":"N Chavannes","year":"2010","unstructured":"Chavannes, N. et al. UNLOCK: uncovering and noting long-term outcomes in COPD to enhance knowledge. Prim. Care Respir. J. 19, 408 (2010).","journal-title":"Prim. Care Respir. J."},{"key":"75_CR5","doi-asserted-by":"publisher","first-page":"408","DOI":"10.4104\/pcrj.2010.00084","volume":"19","author":"N Chavannes","year":"2010","unstructured":"Chavannes, N. et al. UNLOCK: uncovering and noting long-term outcomes in COPD to enhance knowledge. Prim. Care Respir. J. 19, 408 (2010).","journal-title":"Prim. Care Respir. J."},{"key":"75_CR6","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0090145","volume":"9","author":"AL Kruis","year":"2014","unstructured":"Kruis, A. L. et al. Primary care COPD patients compared with large pharmaceutically-sponsored COPD studies: an UNLOCK validation study. PLoS ONE 9, e90145 (2014).","journal-title":"PLoS ONE"},{"key":"75_CR7","doi-asserted-by":"crossref","unstructured":"Balas, E., Boren, S. Managing Clinical Knowledge for Health Care Improvement. in Yearbook of Medical Informatics (eds van Bemmel, J. H. & McCray, A. T.) (Stuttgart: Schattauer Verlagsgesellschaft mbH, 2000).","DOI":"10.1055\/s-0038-1637943"},{"key":"75_CR8","doi-asserted-by":"publisher","first-page":"217","DOI":"10.3152\/147154403781776618","volume":"12","author":"J Grant","year":"2003","unstructured":"Grant, J., Green, L. & Mason, B. Basic research and health: a reassessment of the scientific basis for the support of biomedical science. Res Eval. 12, 217\u201324 (2003).","journal-title":"Res Eval."},{"key":"75_CR9","doi-asserted-by":"publisher","first-page":"510","DOI":"10.1258\/jrsm.2011.110180","volume":"104","author":"ZS Morris","year":"2011","unstructured":"Morris, Z. S., Wooding, S. & Grant, J. The answer is 17 years, what is the question: understanding time lags in translational research. J. Roy. Soc. Med. 104, 510\u201320 (2011).","journal-title":"J. Roy. Soc. Med."},{"key":"75_CR10","doi-asserted-by":"publisher","first-page":"i3319","DOI":"10.1136\/bmj.i3319","volume":"354","author":"EC Nelson","year":"2016","unstructured":"Nelson, E. C. et al. Patient focused registries can improve health, care, and science. BMJ 354, i3319 (2016).","journal-title":"BMJ"},{"key":"75_CR11","doi-asserted-by":"publisher","first-page":"1189","DOI":"10.13063\/2327-9214.1189","volume":"4","author":"R Gini","year":"2016","unstructured":"Gini, R. et al. Data extraction and management in networks of observational health care databases for scientific research: a comparison of EU-ADR, OMOP, Mini-Sentinel, and MATRICE Strategies. EGEMS. 4, 1189 (2016).","journal-title":"EGEMS."},{"key":"75_CR12","doi-asserted-by":"publisher","first-page":"82","DOI":"10.4103\/2229-516X.157148","volume":"5","author":"R Mahajan","year":"2015","unstructured":"Mahajan, R. Real world data: additional source for making clinical decisions. Int J. Appl. Basic Med Res 5, 82 (2015).","journal-title":"Int J. Appl. Basic Med Res"},{"key":"75_CR13","unstructured":"Janis, I. L. Victims of Groupthink (Houghton Mifflin, 1972)."},{"key":"75_CR14","doi-asserted-by":"publisher","first-page":"1657","DOI":"10.1001\/jama.2016.12388","volume":"316","author":"D Blumenthal","year":"2016","unstructured":"Blumenthal, D. & Abrams, M. K. Tailoring complex care management for high-need, high-cost patients. JAMA 316, 1657\u20131658 (2016).","journal-title":"JAMA"},{"key":"75_CR15","unstructured":"Baxter, N. et al. Time to take a breath. National chronic obstructive pulmonary disease (COPD) Audit Programme: clinical audit of COPD in primary care in Wales 2014\u20132015. (RCP: 2016)."},{"key":"75_CR16","doi-asserted-by":"publisher","first-page":"104","DOI":"10.1370\/afm.1903","volume":"14","author":"JE DeVoe","year":"2016","unstructured":"DeVoe, J. E. et al. Perspectives in primary care: a conceptual framework and path for integrating social determinants of health into primary care practice. Ann. Fam. Med. Mar. 14, 104\u20138 (2016).","journal-title":"Ann. Fam. Med. Mar."},{"key":"75_CR17","unstructured":"European Commission, Horizon 2020, Work Programme 2016\u20132017. Health, Demographic Change and Wellbeing (European Commission, 2015)."},{"key":"75_CR18","unstructured":"Bousquet, J. & Khaltaev, N. (eds) Global Surveillance, Prevention and Control of Chronic Respiratory Diseases: A Comprehensive Approach. (World Health Organization, 2007)."},{"key":"75_CR19","doi-asserted-by":"publisher","first-page":"1438","DOI":"10.1016\/S0140-6736(11)60393-0","volume":"377","author":"R Beaglehole","year":"2011","unstructured":"Beaglehole, R. et al. Priority actions for the non-communicable disease crisis. Lancet Apr 377, 1438\u201347 (2011).","journal-title":"Lancet Apr"},{"key":"75_CR20","doi-asserted-by":"publisher","first-page":"995","DOI":"10.1183\/09031936.00012610","volume":"36","author":"J Bousquet","year":"2010","unstructured":"Bousquet, J. et al. Prioritised research agenda for prevention and control of chronic respiratory diseases. Eur. Respir. J. Nov. 36, 995\u20131001 (2010).","journal-title":"Eur. Respir. J. Nov."},{"key":"75_CR21","doi-asserted-by":"publisher","first-page":"19","DOI":"10.4104\/pcrj.2012.00006","volume":"21","author":"H Pinnock","year":"2012","unstructured":"Pinnock, H. et al. Prioritising the respiratory research needs of primary care: The international primary care respiratory group (IPCRG) e-Delphi exercise. Prim. Care Respir. J. 21, 19\u201327 (2012).","journal-title":"Prim. Care Respir. J."},{"key":"75_CR22","unstructured":"Primary Health Care Performance Initiative. Spurring Improvements in Primary Health Care\n                           http:\/\/phcperformanceinitiative.org\/ (2015)."},{"key":"75_CR23","unstructured":"European Commission, Horizon 2020, Work programme 2016\u20132017. Health, Demographic Change and Wellbeing (European Commission, 2015)."},{"key":"75_CR24","unstructured":"World Health Organization Regional Office For Europe. Action Plan to Strengthen the Use of Evidence, Information and Research for Policy-Making in the WHO European Region. (World Health Organization Regional Office For Europe, 2016)."},{"key":"75_CR25","doi-asserted-by":"publisher","first-page":"314","DOI":"10.1177\/1556264615593485","volume":"10","author":"M Walport","year":"2015","unstructured":"Walport, M. & Brest, P. Sharing research data to improve public health. J. Empir. Res Hum. Res Ethics Jul. 10, 314\u2013316 (2015).","journal-title":"J. Empir. Res Hum. Res Ethics Jul."},{"key":"75_CR26","doi-asserted-by":"publisher","first-page":"16048","DOI":"10.1038\/npjpcrm.2016.48","volume":"26","author":"L Cragg","year":"2016","unstructured":"Cragg, L. et al. Fostering the exchange of real-life data across different countries to answer primary care research questions: a protocol for an UNLOCK study from the IPCRG. NPJ Prim. Care Respir. Med. Abstr. 26, 16048 (2016).","journal-title":"NPJ Prim. Care Respir. Med. Abstr."}],"container-title":["npj Primary Care Respiratory Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s41533-018-0075-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41533-018-0075-9","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41533-018-0075-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,12,20]],"date-time":"2022-12-20T22:49:08Z","timestamp":1671576548000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s41533-018-0075-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,3,8]]},"references-count":26,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2018,12]]}},"alternative-id":["75"],"URL":"https:\/\/doi.org\/10.1038\/s41533-018-0075-9","relation":{},"ISSN":["2055-1010"],"issn-type":[{"type":"electronic","value":"2055-1010"}],"subject":[],"published":{"date-parts":[[2018,3,8]]},"assertion":[{"value":"8 December 2016","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"26 January 2018","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 January 2018","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 March 2018","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Mike Thomas in the last 3 years has received speaker\u2019s honoraria for speaking at sponsored meetings or satellite symposia at conferences from the following companies marketing respiratory and allergy products: Aerocrine, AstraZeneca, Boehringer Inglehiem, GSK, MSD, Teva. Novartis. He has received honoraria for attending advisory panels with; Aerocrine, Almirall, AstraZeneca, BI, Chiesi, GSK, MSD, Novartis. He has received sponsorship to attend international scientific meetings from: GSK, AstraZeneca. He has received funding for research projects from: GSK. He is a member of the BTS SIGN Asthma guideline group and the NICE Asthma guideline group. Jaime Correia de Sousa received sponsorships from, or delivered consultancy services to AstraZeneca, GSK, MSD, Novartis, and Boehringer Ingelheim. Thys van der Molen in the last 3 years has received speakers\u2019 honoraria and advisory board honoraria from AstraZeneca, GSK, Boehringer Ingelheim and TEVA. He has received funding for research projects from AstraZeneca and GSK. From June 2017 he is a GSK employee. The remaining authors declare no competing financial interests.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"8"}}