Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency

1 Nunes F, Andersen T, Fitzpatrick G. The agency of patients and carers in medical care and self-care technologies for interacting with doctors. Health Informatics J 2019; 25(2): 330–349. doi: 10.1177/1460458217712054. NunesF AndersenT FitzpatrickG The agency of patients and carers in medical care and self-care technologies for interacting with doctors Health Informatics J 2019 25 2 330 349 10.1177/1460458217712054 28653552 Open DOISearch in Google Scholar

2 Ocloo J, Goodrich J, Tanaka H, et al. The importance of power, context and agency in improving patient experience through a patient and family centred care approach. Health Res Policy Syst 2020; 18(1): 10. doi: 10.1186/s12961-019-0487-1. OclooJ GoodrichJ TanakaH The importance of power, context and agency in improving patient experience through a patient and family centred care approach Health Res Policy Syst 2020 18 1 10 10.1186/s12961-019-0487-1 697936931973712 Open DOISearch in Google Scholar

3 Goodman M. Systems thinking: what, why, when, where and how? The Systems Thinker. Available from https://thesystemsthinker.com/systems-thinking-what-why-when-where-and-how/ (accessed 17 February 2022). GoodmanM Systems thinking: what, why, when, where and how? The Systems Thinker Available from https://thesystemsthinker.com/systems-thinking-what-why-when-where-and-how/ (accessed 17 February 2022). Search in Google Scholar

4 Salzburg Global Seminar. Salzburg statement on shared decision making. BMJ 2011; 342:d1745. doi: 10.1136/bmj.d1745. Salzburg Global Seminar Salzburg statement on shared decision making BMJ 2011 342 d1745 10.1136/bmj.d1745 21427038 Open DOISearch in Google Scholar

5 Coulter A, Härter M, Moumjid-Ferdjaoui N, Perestelo-Perez L, van der Weijden T. European Experience with Shared Decision Making. 2015. halshs-01247699. Available from https://halshs.archives-ouvertes.fr/halshs-01247699/document (accessed 24 January 2022). CoulterA HärterM Moumjid-FerdjaouiN Perestelo-PerezL van der WeijdenT European Experience with Shared Decision Making 2015 halshs-01247699. Available from https://halshs.archives-ouvertes.fr/halshs-01247699/document (accessed 24 January 2022). Search in Google Scholar

6 del Río-Lanza AB, Suárez-Álvarez L, Suárez-Vázquez A, et al. Information provision and attentive listening as determinants of patient perceptions of shared decision-making around chronic illnesses. Springerplus 2016; 5: 1386. doi: 10.1186/s40064-016-3086-4. del Río-LanzaAB Suárez-ÁlvarezL Suárez-VázquezA Information provision and attentive listening as determinants of patient perceptions of shared decision-making around chronic illnesses Springerplus 2016 5 1386 10.1186/s40064-016-3086-4 499371927610305 Open DOISearch in Google Scholar

7 Waddell A, Lennox A, Spassova G, Bragge P. Barriers and facilitators to shared decision-making in hospitals from policy to practice: a systematic review. Implement Sci 2021; 16: 74. doi: 10.1186/s13012-021-01142-y. WaddellA LennoxA SpassovaG BraggeP Barriers and facilitators to shared decision-making in hospitals from policy to practice: a systematic review Implement Sci 2021 16 74 10.1186/s13012-021-01142-y 832531734332601 Open DOISearch in Google Scholar

8 Valentino L, Blanchette V, Negrier C, et al. Personalising haemophilia management with shared decision making. J Haem Pract 2021; 8(1): 69–79. doi: 10.17225/jhp00178. ValentinoL BlanchetteV NegrierC Personalising haemophilia management with shared decision making J Haem Pract 2021 8 1 69 79 10.17225/jhp00178 Open DOISearch in Google Scholar

9 Karazivan P, Dumez V, Flora L, et al. The patient-as-partner approach to care. A conceptual framework for a necessary transition. Acad Med 2015; 90(4): 437–441. doi: 10.1097/ACM.0000000000000603. KarazivanP DumezV FloraL The patient-as-partner approach to care. A conceptual framework for a necessary transition Acad Med 2015 90 4 437 441 10.1097/ACM.0000000000000603 25607943 Open DOISearch in Google Scholar

10 Moleman M, Regeer BJ, Schuitmaker-Warnaar TJ. Shared decision-making and the nuances of clinical work: Concepts, barriers and opportunities for a dynamic model. J Eval Clin Pract 2021; 27(4): 926–934. doi: 10.1111/jep.13507. MolemanM RegeerBJ Schuitmaker-WarnaarTJ Shared decision-making and the nuances of clinical work: Concepts, barriers and opportunities for a dynamic model J Eval Clin Pract 2021 27 4 926 934 10.1111/jep.13507 835919933164316 Open DOISearch in Google Scholar

11 Woolard L, Gorman R, Rosenfelt DJ. Addressing patient education priorities in the era of gene therapy for haemophilia: Towards evidence-informed shared decision-making. Haemophilia 2021; 27: e302–e304. doi: 10.1111/hae.14214. WoolardL GormanR RosenfeltDJ Addressing patient education priorities in the era of gene therapy for haemophilia: Towards evidence-informed shared decision-making Haemophilia 2021 27 e302 e304 10.1111/hae.14214 33245825 Open DOISearch in Google Scholar

12 Babac A, von Friedrichs V, Litzkendorf S, et al. Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process. BMC Med Inform Decis Mak 2019; (19): 188. doi: 10.1186/s12911-019-0911-z. BabacA von FriedrichsV LitzkendorfS Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process BMC Med Inform Decis Mak 2019 19 188 10.1186/s12911-019-0911-z 675182031533712 Open DOISearch in Google Scholar

13 Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: A systematic review and thematic analysis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 2014; 94: 291–309. doi: 10.1016/j.pec.2013.10.031. Joseph-WilliamsN ElwynG EdwardsA Knowledge is not power for patients: A systematic review and thematic analysis of patient-reported barriers and facilitators to shared decision making Patient Educ Couns 2014 94 291 309 10.1016/j.pec.2013.10.031 24305642 Open DOISearch in Google Scholar

14 Land V, Parry R, Seymour J. Communication practices that encourage and constrain shared decision making in health-care encounters: Systematic review of conversation analytic research. Health Expect 2017; 20(6): 1228–1247. doi: 10.1111/hex.12557. LandV ParryR SeymourJ Communication practices that encourage and constrain shared decision making in health-care encounters: Systematic review of conversation analytic research Health Expect 2017 20 6 1228 1247 10.1111/hex.12557 569023228520201 Open DOISearch in Google Scholar

15 Wolderslund M, Kofoed P-E, Holst R, Axboe M, Ammentorp J. Digital audio recordings improve the outcomes of patient consultations: A randomised cluster trial. Patient Educ Couns 2017; 100(2): 242–249. doi: 10.1016/j.pec.2016.08.029. Epub 2016 Aug 29. WolderslundM KofoedP-E HolstR AxboeM AmmentorpJ Digital audio recordings improve the outcomes of patient consultations: A randomised cluster trial Patient Educ Couns 2017 100 2 242 249 10.1016/j.pec.2016.08.029 Epub 2016 Aug 29. 27593087 Open DOISearch in Google Scholar

16 European Patients Forum. Patient empowerment. Available from https://www.eu-patient.eu/policy/Policy/patient-empowerment/ (accessed 25 January 2022). European Patients Forum Patient empowerment Available from https://www.eu-patient.eu/policy/Policy/patient-empowerment/ (accessed 25 January 2022). Search in Google Scholar

17 Bonsignore C, Brolis E, Ionescu A, et al. Patient empowerment and centredness. European Health Parliament, 2015. Available from https://www.healthparliament.eu/patient-empowerment-centredness/ (accessed 25 January 2022). BonsignoreC BrolisE IonescuA Patient empowerment and centredness European Health Parliament 2015 Available from https://www.healthparliament.eu/patient-empowerment-centredness/ (accessed 25 January 2022). Search in Google Scholar

18 De Santis M, Hervas C, Weinman A, Bottarelli V. Patient empowerment – policy brief. RD Action, 2018. Available from http://www.rd-action.eu/wp-content/uploads/2018/09/PATIENT-EMPOWERMENT.pdf (accessed 25 January 2022). De SantisM HervasC WeinmanA BottarelliV Patient empowerment – policy brief RD Action, 2018 Available from http://www.rd-action.eu/wp-content/uploads/2018/09/PATIENT-EMPOWERMENT.pdf (accessed 25 January 2022). Search in Google Scholar

19 WHO. Improving health literacy. Available from https://www.who.int/activities/improving-health-literacy (accessed 24 January 2022). WHO Improving health literacy Available from https://www.who.int/activities/improving-health-literacy (accessed 24 January 2022). Search in Google Scholar

20 EUPATI. Patient engagement through education. Available from https://eupati.eu (accessed 24 January 2022). EUPATI Patient engagement through education Available from https://eupati.eu (accessed 24 January 2022). Search in Google Scholar

21 Innovative Patients Initiative. PARADIGM: a ‘game changer’ for patient engagement in R&D. 30/01/2020. Available from https://www.imi.europa.eu/news-events/newsroom/paradigm-game-changer-patient-engagement-rd (accessed 24 January 2022). Innovative Patients Initiative PARADIGM: a ‘game changer’ for patient engagement in R&D. 30/01/2020 Available from https://www.imi.europa.eu/news-events/newsroom/paradigm-game-changer-patient-engagement-rd (accessed 24 January 2022). Search in Google Scholar

22 Innovative Patients Initiative. Regulators tentatively endorse patient preference approach. 29/10/2021. Available from https://www.imi.europa.eu/news-events/newsroom/regulators-tentatively-endorse-patient-preference-approach (accessed 24 January 2022). Innovative Patients Initiative Regulators tentatively endorse patient preference approach 29/10/2021. Available from https://www.imi.europa.eu/news-events/newsroom/regulators-tentatively-endorse-patient-preference-approach (accessed 24 January 2022). Search in Google Scholar

23 PCORI. Patient-Centered Outcomes Research Institute. Available from https://www.pcori.org (accessed 28 February 2022). PCORI Patient-Centered Outcomes Research Institute Available from https://www.pcori.org (accessed 28 February 2022). Search in Google Scholar

24 DCPP, CIO-UdeM. Competency Framework for Collaborative Practice and Patient Partnership in Health and Social Services. 2019. Montréal, Québec: Université de Montréal. Available from https://ceppp.ca/en/resources/collaboration-and-patient-partnership-unit-2019-interprofessional-collaborative-practice-and-patient-partnership-in-health-and-social-services-competency-framework/ (accessed 28 February 2022). DCPP, CIO-UdeM Competency Framework for Collaborative Practice and Patient Partnership in Health and Social Services 2019 Montréal, Québec Université de Montréal Available from https://ceppp.ca/en/resources/collaboration-and-patient-partnership-unit-2019-interprofessional-collaborative-practice-and-patient-partnership-in-health-and-social-services-competency-framework/ (accessed 28 February 2022). Search in Google Scholar

25 Murphy A, Bere N, Vamvakas S, Mavris M. The added value of patient engagement in early dialogue at EMA: Scientific Advice as a case study. Front Med 2022; 8: 811855. doi: 10.3389/fmed.2021.811855. MurphyA BereN VamvakasS MavrisM The added value of patient engagement in early dialogue at EMA: Scientific Advice as a case study Front Med 2022 8 811855 10.3389/fmed.2021.811855 881112435127766 Open DOISearch in Google Scholar

26 Millenson ML, Sarasohn-Kahn J. Old media to new health: from information to interactivity. In: Grando MA, Rozenblum R, Baters DW, eds. Information Technology for Patient Empowerment in Healthcare. 2015. Berlin: De Gruyter. MillensonML Sarasohn-KahnJ Old media to new health: from information to interactivity In: GrandoMA RozenblumR BatersDW eds. Information Technology for Patient Empowerment in Healthcare 2015 Berlin De Gruyter 10.1515/9781614514343-009 Search in Google Scholar

27 Wigfall LT, Tanner AH. Health literacy and healthcare engagement as predictors of shared decision making among adult information seekers in the United States: a secondary data analysis of the Health Information National Trends Survey. J Cancer Educ 2018; 33(1): 67–73. doi: 10.1007/s13187-016-1052-z. WigfallLT TannerAH Health literacy and healthcare engagement as predictors of shared decision making among adult information seekers in the United States: a secondary data analysis of the Health Information National Trends Survey J Cancer Educ 2018 33 1 67 73 10.1007/s13187-016-1052-z 513565327251634 Open DOISearch in Google Scholar

28 Miesbach W, O’Mahony B, Key NS, Makris M. How to discuss gene therapy for haemophilia? A patient and physician perspective. Haemophilia 2019; 25(4): 545–557. doi: 10.1111/hae.13769. MiesbachW O’MahonyB KeyNS MakrisM How to discuss gene therapy for haemophilia? A patient and physician perspective Haemophilia 2019 25 4 545 557 10.1111/hae.13769 685220731115117 Open DOISearch in Google Scholar

29 Ibrahim H, Liu X, Zariffa N, Morris AD, Denniston AK. Health data poverty: an assailable barrier to digital health care. Lancet Digit Health 2021; 3(4): E260–E265. doi: 10.1016/S2589-7500(20)30317-4. IbrahimH LiuX ZariffaN MorrisAD DennistonAK Health data poverty: an assailable barrier to digital health care Lancet Digit Health 2021 3 4 E260 E265 10.1016/S2589-7500(20)30317-4 33678589 Open DOISearch in Google Scholar

30 Verma A, Pagliari C, Ali O, Dalgarno E. How the digital healthcare revolution leaves the most vulnerable behind. Policy@Manchester Blogs: Digital Futures. The University of Manchester. 20 January 2022. Available from https://blog.policy.manchester.ac.uk/digital-futures/2022/01/how-the-digital-healthcare-revolution-leaves-the-most-vulnerable-behind/ (accessed 27 January 2022). VermaA PagliariC AliO DalgarnoE How the digital healthcare revolution leaves the most vulnerable behind Policy@Manchester Blogs: Digital Futures. The University of Manchester. 20 January 2022 Available from https://blog.policy.manchester.ac.uk/digital-futures/2022/01/how-the-digital-healthcare-revolution-leaves-the-most-vulnerable-behind/ (accessed 27 January 2022). Search in Google Scholar

31 Palumno R. The Bright Side and the Dark Side of Patient Empowerment. Co-Creation and Co-Destruction of Value in the Healthcare Environment. Springer Briefs in Public Health. 2017. Cham, Switzerland: Springer. PalumnoR The Bright Side and the Dark Side of Patient Empowerment. Co-Creation and Co-Destruction of Value in the Healthcare Environment Springer Briefs in Public Health. 2017 Cham, Switzerland Springer 10.1007/978-3-319-58344-0 Search in Google Scholar

32 Budych K, Helms TM, Schultz C. How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction. Health Policy 2012; 105: 154–164. doi: 10.1016/j.healthpol.2012.02.018. BudychK HelmsTM SchultzC How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction Health Policy 2012 105 154 164 10.1016/j.healthpol.2012.02.018 22464590 Open DOISearch in Google Scholar

33 Green J, Hibbard JH, Sacks R, Overton V, Parrotta D. When patient activation levels change, health outcomes and costs change, too. Health Aff (Millwood) 2015 34:3, 431–437. doi: 10.1377/hlthaff.2014.0452. GreenJ HibbardJH SacksR OvertonV ParrottaD When patient activation levels change, health outcomes and costs change, too Health Aff (Millwood) 2015 34 3 431 437 10.1377/hlthaff.2014.0452 25732493 Open DOISearch in Google Scholar

34 Morel M, Cano SJ. Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centred outcome measures. Orphanet J Rare Dis 2017; 12: 171. doi: 10.1186/s13023-017-0718-x. MorelM CanoSJ Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centred outcome measures Orphanet J Rare Dis 2017 12 171 10.1186/s13023-017-0718-x 566752129096663 Open DOISearch in Google Scholar

35 Hirpa M, Woreta T, Addis H, Kebede S. What matters most to patients? A timely question for value-based care. PLoS ONE 2020; 15(7): e0227845. doi: 10.1371/journal.pone.0227845. HirpaM WoretaT AddisH KebedeS What matters most to patients? A timely question for value-based care PLoS ONE 2020 15 7 e0227845 10.1371/journal.pone.0227845 734720132644993 Open DOISearch in Google Scholar

36 Grogan A, Coughlan M, O’Mahony B, McKee G. The development of a patient partnership programme and its impact on quality improvements in a comprehensive haemophilia care service. Haemophilia 2012; 18: 875–880. doi: 10.1111/1365-2516.2012.02885.x. GroganA CoughlanM O’MahonyB McKeeG The development of a patient partnership programme and its impact on quality improvements in a comprehensive haemophilia care service Haemophilia 2012 18 875 880 10.1111/1365-2516.2012.02885.x Open DOISearch in Google Scholar

37 Beaglehole R, Epping-Jordan J, Patel V, et al. Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary healthcare. Lancet 2008; 372(9642): 940–949. doi: https://doi.org/10.1016/S0140-6736(08)61404-X. BeagleholeR Epping-JordanJ PatelV Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary healthcare Lancet 2008 372 9642 940 949 https://doi.org/10.1016/S0140-6736(08)61404-X 10.1016/S0140-6736(08)61404-X18790317 Search in Google Scholar

38 Luxford K, Safran DG, Delbanco. Promoting patient-centred care: a qualitative study of facilitators and barriers in healthcare organizations with a reputation for improving the patient experience. Int J Qual Health Care 2011; 23(5): 510–5. doi: 10.1093/intqhc/mzr024. LuxfordK SafranDG Delbanco Promoting patient-centred care: a qualitative study of facilitators and barriers in healthcare organizations with a reputation for improving the patient experience Int J Qual Health Care 2011 23 5 510 5 10.1093/intqhc/mzr024 21586433 Open DOISearch in Google Scholar

39 European Health Parliament. Committee on Health Literacy and Self-Care. Making Europe Health Literate by 2025: Seven Actions to Promote Health Literacy and Self-Care in the Digital Era. 2018–2019. Available from https://www.healthparliament.eu/hlsc/ (accessed 27 January 2022). European Health Parliament Committee on Health Literacy and Self-Care. Making Europe Health Literate by 2025: Seven Actions to Promote Health Literacy and Self-Care in the Digital Era 2018–2019 Available from https://www.healthparliament.eu/hlsc/ (accessed 27 January 2022). Search in Google Scholar

40 Nielsen-Bohman L, Panzer AM, Kindig DA. Health Literacy: A Prescription to End Confusion. 2004. Washington, DC: Institute of Medicine: National Academics Press. Nielsen-BohmanL PanzerAM KindigDA Health Literacy: A Prescription to End Confusion 2004 Washington, DC Institute of Medicine: National Academics Press 10.17226/1088325009856 Search in Google Scholar

41 Arthur SA, Geiser HR, Arriola KRJ, Kripalani S. Health literacy and control in the medical encounter: a mixed methods analysis original communication. J Natl Med Assoc 2009; 101(7): 677–683. Doi: 10.1016/s0027-9684(15)30976-7. ArthurSA GeiserHR ArriolaKRJ KripalaniS Health literacy and control in the medical encounter: a mixed methods analysis original communication J Natl Med Assoc 2009 101 7 677 683 10.1016/s0027-9684(15)30976-7 357573619634588 Open DOISearch in Google Scholar

42 Paasche-Orlow MK, Wolf MS. Promoting health literacy research to reduce health disparities. J Health Commun 2010; 15 Suppl 2: 34–41. doi: 10.1080/10810730.2010.499994. Paasche-OrlowMK WolfMS Promoting health literacy research to reduce health disparities J Health Commun 2010 15 Suppl 2 34 41 10.1080/10810730.2010.499994 20845191 Open DOISearch in Google Scholar

43 Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. Public Health 2016; 132: 3–12. doi: 10.1016/j.puhe.2016.01.001. BatterhamRW HawkinsM CollinsPA BuchbinderR OsborneRH Health literacy: applying current concepts to improve health services and reduce health inequalities Public Health 2016 132 3 12 10.1016/j.puhe.2016.01.001 26872738 Open DOISearch in Google Scholar

44 EHC. Think Tank. Available from https://www.ehc.eu/thinktank/ (accessed 31 January 2022). EHC Think Tank Available from https://www.ehc.eu/thinktank/ (accessed 31 January 2022). Search in Google Scholar

45 Chatham House. Chatham House rule. Avalailable from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 31 January 2022). Chatham House Chatham House rule Avalailable from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 31 January 2022). Search in Google Scholar