{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,29]],"date-time":"2026-08-29T02:11:47Z","timestamp":1787969507892,"version":"build-2784847793"},"reference-count":44,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2024,8,29]],"date-time":"2024-08-29T00:00:00Z","timestamp":1724889600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>The spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients\u2019 answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants\u2019 PROMs data are fed back into the PDA, thus \u201cclosing the circle\u201d between the decision-making process and patient-reported data collection.<\/jats:p><jats:p>During the first 14\u2009months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (<jats:italic>n<\/jats:italic>\u2009=\u20096) was 36.15 of 45 points.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Various obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpubh.2024.1452440","type":"journal-article","created":{"date-parts":[[2024,8,29]],"date-time":"2024-08-29T04:58:45Z","timestamp":1724907525000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":13,"title":["Closing the value-based circle in shared decision-making: a digital framework for informing the shared decision-making process through patient reported outcome and experience measures"],"prefix":"10.3389","volume":"12","author":[{"given":"Marta","family":"del Olmo Rodr\u00edguez","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rafael","family":"Martos Martinez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adriana","family":"Pascual Mart\u00ednez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolina","family":"Miranda Castillo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jorge","family":"Short Apellaniz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernadette","family":"Pfang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Enrique","family":"Baca-Garc\u00eda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ra\u00fal","family":"C\u00f3rdoba Mascu\u00f1ano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2024,8,29]]},"reference":[{"key":"ref1","first-page":"24","article-title":"The strategy that will fix healthcare","volume":"91","author":"Porter","year":"2013","journal-title":"Harv Bus Rev"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"3669","DOI":"10.1007\/s00520-016-3297-9","article-title":"The association between clinician-based common terminology criteria for adverse events (CTCAE) and patient-reported outcomes (PRO): a systematic review","volume":"24","author":"Atkinson","year":"2016","journal-title":"Support Care Cancer"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"225","DOI":"10.1001\/JAMAOPHTHALMOL.2016.5551","article-title":"Agreement of ocular symptom reporting between patient-reported outcomes and medical records","volume":"135","author":"Valikodath","year":"2017","journal-title":"JAMA Ophthalmol"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"331","DOI":"10.1016\/J.CLON.2023.02.003","article-title":"Correlation of clinician- and patient-reported outcomes in the BC2001 trial","volume":"35","author":"Philipps","year":"2023","journal-title":"Clin Oncol"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"504","DOI":"10.1056\/NEJMP1511701","article-title":"Standardizing patient outcomes measurement","volume":"374","author":"Porter","year":"2016","journal-title":"N Engl J Med"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"e256","DOI":"10.1136\/BMJ.E256","article-title":"Shared decision making: really putting patients at the Centre of healthcare","volume":"344","author":"Stiggelbout","year":"2012","journal-title":"BMJ"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"125","DOI":"10.1016\/J.JCLINEPI.2017.04.017","article-title":"Montreal accord on patient-reported outcomes (PROs) use series \u2013 paper 3: patient-reported outcomes can facilitate shared decision-making and guide self-management","volume":"89","author":"Noonan","year":"2017","journal-title":"J Clin Epidemiol"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"182","DOI":"10.1046\/J.1369-6513.2000.00093.X","article-title":"Implementing shared decision-making in routine practice: barriers and opportunities","volume":"3","author":"Holmes-Rovner","year":"2000","journal-title":"Health Expect"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1001\/JAMA.2019.3785","article-title":"Shared decision making and the importance of time","volume":"322","author":"Pieterse","year":"2019","journal-title":"JAMA"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"2116","DOI":"10.1111\/1475-6773.12420","article-title":"Using patient-reported information to improve clinical practice","volume":"50","author":"Schlesinger","year":"2015","journal-title":"Health Serv Res"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"e110229","DOI":"10.1371\/JOURNAL.PONE.0110229","article-title":"Systematic evaluation of the patient-reported outcome (PRO) content of clinical trial protocols","volume":"9","author":"Kyte","year":"2014","journal-title":"PLoS One"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/S12885-024-11963-X\/TABLES\/7","article-title":"Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer)","volume":"24","author":"Sawyer","year":"2024","journal-title":"BMC Cancer"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"863040","DOI":"10.3389\/FCVM.2022.863040","article-title":"Shared decision-making and patient-reported outcome measures in Valvular heart disease","volume":"9","author":"Saeed","year":"2022","journal-title":"Front Cardiovasc Med"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"364","DOI":"10.3389\/FPED.2020.00364","article-title":"Patient-reported outcome measures in routine pediatric clinical care: a systematic review","volume":"8","author":"Bele","year":"2020","journal-title":"Front Pediatr"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"5253","DOI":"10.1007\/S00520-021-06052-9","article-title":"Patient-reported outcome measures in oncology: a qualitative study of the healthcare professional\u2019s perspective","volume":"29","author":"Graupner","year":"2021","journal-title":"Support Care Cancer"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"E2331301","DOI":"10.1001\/JAMANETWORKOPEN.2023.31301","article-title":"Electronic patient-reported outcome monitoring to improve quality of life after joint replacement: secondary analysis of a randomized clinical trial","volume":"6","author":"Steinbeck","year":"2023","journal-title":"JAMA Netw Open"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"186","DOI":"10.1002\/JMRS.421","article-title":"A review of the barriers to using patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) in routine cancer care","volume":"68","author":"Nguyen","year":"2021","journal-title":"J Med Radiat Sci"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"e15588","DOI":"10.2196\/15588","article-title":"Benefits and disadvantages of electronic patient-reported outcome measures: systematic review","volume":"3","author":"Meirte","year":"2020","journal-title":"JMIR Perioper Med"},{"key":"ref19","doi-asserted-by":"publisher","DOI":"10.1056\/CAT.23.0083","article-title":"Implementing a broad digital framework to drive network strategy through PROMs and PREMs","volume":"4","author":"del Olmo","year":"2023","journal-title":"NEJM Catal Innov Care Deliv"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1007\/s10198-019-01070-1","article-title":"Is the trend of increasing use of patient-reported outcome measures in medical device studies the sign of shift towards value-based purchasing in Europe?","volume":"20","author":"Weszl","year":"2019","journal-title":"Eur J Health Econom"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"524","DOI":"10.1111\/JEP.13321","article-title":"The use of PROMs and shared decision-making in medical encounters with patients: an opportunity to deliver value-based health care to patients","volume":"26","author":"Damman","year":"2020","journal-title":"J Eval Clin Pract"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"971","DOI":"10.1136\/BMJ.C5146","article-title":"Implementing shared decision making in the NHS","volume":"341","author":"Elwyn","year":"2010","journal-title":"BMJ"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"d1745","DOI":"10.1136\/bmj.d1745","article-title":"Salzburg statement on shared decision making","volume":"342","year":"2011","journal-title":"BMJ"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"276","DOI":"10.1377\/HLTHAFF.2012.1078","article-title":"Shared decision making: examining key elements and barriers to adoption into routine clinical practice","volume":"32","author":"L\u00e9gar\u00e9","year":"2013","journal-title":"Health Aff"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"549","DOI":"10.1016\/j.amjmed.2011.01.013","article-title":"Use of a decision aid to improve treatment decisions in osteoporosis: the osteoporosis choice randomized trial","volume":"124","author":"Montori","year":"2011","journal-title":"Am J Med"},{"key":"ref26","doi-asserted-by":"publisher","first-page":"736","DOI":"10.1136\/bmj.327.7417.736","article-title":"Risk communication in practice: the contribution of decision aids","volume":"327","author":"O\u2019Connor","year":"2003","journal-title":"BMJ"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/S12911-021-01735-Z\/TABLES\/2","article-title":"Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing","volume":"22","author":"van den Heuvel","year":"2022","journal-title":"BMC Med Inform Decis Mak"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"105","DOI":"10.1093\/ONCOLO\/OYAC231","article-title":"A systematic review of decision aids in hematologic malignancies: what are currently available and what are we missing?","volume":"28","author":"Zhao","year":"2023","journal-title":"Oncologist"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"83","DOI":"10.1038\/s41572-019-0132-x","article-title":"Follicular lymphoma","volume":"1","author":"Carbone","year":"2019","journal-title":"Nat Rev Dis Prim"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"443","DOI":"10.3322\/CAAC.21357","article-title":"2016 US lymphoid malignancy statistics by World Health Organization subtypes","volume":"66","author":"Teras","year":"2016","journal-title":"CA Cancer J Clin"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"1575","DOI":"10.1038\/BJC.2015.94","article-title":"Lymphoma incidence, survival and prevalence 2004-2014: sub-type analyses from the UK\u2019s Haematological malignancy research network","volume":"112","author":"Smith","year":"2015","journal-title":"Br J Cancer"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"265","DOI":"10.1182\/BLOOD-2005-06-2508","article-title":"Lymphoma incidence patterns by WHO subtype in the United States, 1992-2001","volume":"107","author":"Morton","year":"2006","journal-title":"Blood"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"984","DOI":"10.1200\/JCO.18.00605","article-title":"First-line treatment of patients with indolent non-Hodgkin lymphoma or mantle-cell lymphoma with Bendamustine plus rituximab versus R-CHOP or R-CVP: results of the BRIGHT 5-year follow-up study","volume":"37","author":"Flinn","year":"2019","journal-title":"J Clin Oncol"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"413","DOI":"10.1093\/EURPUB\/CKY257","article-title":"The impact of a comprehensive electronic patient portal on the health service use: an interrupted time-series analysis","volume":"29","author":"Nicol\u00e1s","year":"2019","journal-title":"Eur J Pub Health"},{"key":"ref35","year":"2005"},{"key":"ref36","doi-asserted-by":"publisher","first-page":"319","DOI":"10.1016\/j.pec.2006.04.012","article-title":"Development and first validation of the shared decision-making questionnaire (SDM-Q)","volume":"63","author":"Simon","year":"2006","journal-title":"Patient Educ Couns"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"878","DOI":"10.1016\/j.annonc.2022.04.007","article-title":"The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO clinical practice guideline \u2606","volume":"33","author":"Di Maio","year":"2022","journal-title":"Ann Oncol"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"255","DOI":"10.1007\/S40271-023-00616-Z","article-title":"Improving outcome-driven Care in Multiple Myeloma Using Patient-Reported Outcomes: a qualitative evaluation study","volume":"16","author":"Bennink","year":"2023","journal-title":"Patient"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1002\/HON.2138","article-title":"Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences","volume":"33","author":"Rood","year":"2015","journal-title":"Hematol Oncol"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"1247","DOI":"10.1016\/J.HEALTHPOL.2021.07.001","article-title":"Facilitators and barriers for implementing patient-reported outcome measures in clinical care: an academic center\u2019s initial experience","volume":"125","author":"Amini","year":"2021","journal-title":"Health Policy"},{"key":"ref41","doi-asserted-by":"publisher","DOI":"10.1177\/20552076221074485\/ASSET\/IMAGES\/LARGE\/10.1177_20552076221074485-FIG1.JPEG","article-title":"The role of age and digital competence on the use of online health and social care services: a cross-sectional population-based survey","volume":"8","author":"Heponiemi","year":"2022","journal-title":"Digit Health"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"1048","DOI":"10.1016\/j.jpainsymman.2019.08.014","article-title":"A video decision aid improves informed decision making in patients with advanced Cancer considering palliative radiation therapy","volume":"58","author":"Dharmarajan","year":"2019","journal-title":"J Pain Symptom Manag"},{"key":"ref43","doi-asserted-by":"publisher","first-page":"272","DOI":"10.1080\/07347332.2019.1692991","article-title":"A multi-center randomized controlled trial to reduce unmet needs, depression, and anxiety among hematological cancer patients and their support persons","volume":"38","author":"Stevenson","year":"2020","journal-title":"J Psychosoc Oncol"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"3563","DOI":"10.1007\/s00520-020-05864-5","article-title":"A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial","volume":"29","author":"Hildenbrand","year":"2021","journal-title":"Support Care Cancer"}],"container-title":["Frontiers in Public Health"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2024.1452440\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,8,29]],"date-time":"2024-08-29T04:58:48Z","timestamp":1724907528000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2024.1452440\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,29]]},"references-count":44,"alternative-id":["10.3389\/fpubh.2024.1452440"],"URL":"https:\/\/doi.org\/10.3389\/fpubh.2024.1452440","relation":{},"ISSN":["2296-2565"],"issn-type":[{"value":"2296-2565","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,29]]},"article-number":"1452440"}}