Transforming Personal Healthcare through Patient Engagement: An In-Depth Analysis of Tools and Methods for the Digital Age
Authors: Emily Hickmann, Peggy Richter, Maren Kählig, Hannes Schlieter
Abstract:
Patient engagement is a cornerstone of high-quality care and essential for patients with chronic diseases to achieve improved health outcomes. Through digital transformation, possibilities to engage patients in their personal healthcare have multiplied. However, the exploitation of this potential is still lagging. To support the transmission of patient engagement theory into practice, this paper’s objective is to give a state-of-the-art overview of patient engagement tools and methods. A systematic literature review was conducted. Overall, 56 tools and methods were extracted and synthesized according to the four attributes of patient engagement, i.e., personalization, access, commitment, and therapeutic alliance. The results are discussed in terms of their potential to be implemented in digital health solutions under consideration of the “computers are social actors” (CASA) paradigm. It is concluded that digital health can catalyze patient engagement in practice, and a broad future research agenda is formulated.
Keywords: Chronic diseases, digitalization, patient-centeredness, patient empowerment, patient engagement.
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[1] WHO. Non communicable diseases. 2022. https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases. Accessed 13 Jun 2023.
[2] PAHO/WHO. The Chronic Care Model. Pan American Health Organization/World Health Organization. 2013. https://www3.paho.org/hq/index.php?option=com_content&view=article &id=8502:2013-the-chronic-care-model&Itemid=0&lang=en#gsc.tab=0. Accessed 13 Jun 2023.
[3] Fernandez-Lazaro CI, García-González JM, Adams DP, Fernandez-Lazaro D, Mielgo-Ayuso J, Caballero-Garcia A, et al. Adherence to treatment and related factors among patients with chronic conditions in primary care: a cross-sectional study. BMC Family Practice. 2019;20:132.
[4] Hickmann E, Richter P, Schlieter H. All together now - patient engagement, patient empowerment, and associated terms in personal healthcare. BMC Health Serv Res. 2022;22:1116.
[5] Fox BI, Felkey BG. Engaging patients with digital tools: what we think we know. Hosp Pharm. 2014;49:992–3.
[6] De Santis M, Hervas C, Weinman A, Bottarelli V. Patient Empowerment. 2018.
[7] WHO. Patient engagement. Geneva: World Health Organization; 2016.
[8] Kasahun AE, Sendekie AK, Mekonnen GA, Sema FD, Kemal LK, Abebe RB. Impact of Personal, Cultural and Religious Beliefs on Medication Adherence among Patients with Chronic Diseases at University Hospital in Northwest Ethiopia. PPA. 2022;16:1787–803.
[9] Bombard Y, Baker GR, Orlando E, Fancott C, Bhatia P, Casalino S, et al. Engaging patients to improve quality of care: a systematic review. Implementation Science. 2018;13:98.
[10] Kish L. Patient Engagement is a Strategy, Not a Tool. HL7 Health Standards. 2014;45.
[11] Weimann TG, Schlieter H, Brendel AB. Virtual Coaches. Bus Inf Syst Eng. 2022;64:515–28.
[12] Benedict M, Schlieter H, Burwitz M, Scheplitz T, Susky M, Richter P. A Reference Architecture Approach for Pathway-Based Patient Integration. In: 2019 IEEE 23rd International Enterprise Distributed Object Computing Conference (EDOC). 2019. p. 58–66.
[13] Weinhold I, Gastaldi L. From Shared Decision Making to Patient Engagement in Health Care Processes: The Role of Digital Technologies. 2016. p. 185–96.
[14] Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A. Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Educ Couns. 2016;99:1923–39.
[15] Higgins T, Larson E, Schnall R. Unraveling the meaning of patient engagement: A concept analysis. Patient Educ Couns. 2017;100:30–6.
[16] Lawani MA, Valéra B, Fortier-Brochu É, Légaré F, Carmichael P-H, Côté L, et al. Five shared decision-making tools in 5 months: use of rapid reviews to develop decision boxes for seniors living with dementia and their caregivers. Syst Rev. 2017;6:56.
[17] Bae J-M. Strategies for Appropriate Patient-centered Care to Decrease the Nationwide Cost of Cancers in Korea. J Prev Med Public Health. 2017;50:217–27.
[18] Cooper HM. Organizing knowledge syntheses: A taxonomy of literature reviews. Knowledge in Society. 1988;1:104–26.
[19] Hewitt G. Healthcare Anywhere: innovation for patient empowerment. Health Europa; 2021.
[20] Kruser JM, Nabozny MJ, Steffens NM, Brasel KJ, Campbell TC, Gaines ME, et al. “Best Case/Worst Case”: Qualitative Evaluation of a Novel Communication Tool for Difficult in-the-Moment Surgical Decisions. J Am Geriatr Soc. 2015;63:1805–11.
[21] Scalia P, Elwyn G, Barr P, Song J, Zisman-Ilani Y, Lesniak M, et al. Exploring the use of Option GridTM patient decision aids in a sample of clinics in Poland. Z Evid Fortbild Qual Gesundhwes. 2018;134:1–8.
[22] Jayakumar P, Moore MG, Furlough KA, Uhler LM, Andrawis JP, Koenig KM, et al. Comparison of an Artificial Intelligence-Enabled Patient Decision Aid vs Educational Material on Decision Quality, Shared Decision-Making, Patient Experience, and Functional Outcomes in Adults with Knee Osteoarthritis: A Randomized Clinical Trial. JAMA Netw Open. 2021;4:e2037107.
[23] Hernández-Leal MJ, Codern-Bové N, Pérez-Lacasta MJ, Cardona A, Vidal-Lancis C, Carles-Lavila M. Development of support material for health professionals who are implementing Shared Decision-making in breast cancer screening: validation using the Delphi technique. BMJ Open. 2022;12:e052566.
[24] Mertz K, Shah RF, Eppler SL, Yao J, Safran M, Palanca A, et al. A Simple Goal Elicitation Tool Improves Shared Decision Making in Outpatient Orthopedic Surgery: A Randomized Controlled Trial. Med Decis Making. 2020;40:766–73.
[25] Postma S, Schers H, van de Belt T, van Boven K, Ten Napel H, Stappers H, et al. Assessment of functioning in Dutch primary care: Development study of a consultation tool for patients with chronic conditions and multimorbidity. Health Expect. 2022;25:1363–73.
[26] van der Steen JT, Heck S, Juffermans CC, Garvelink MM, Achterberg WP, Clayton J, et al. Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study. BMJ Open. 2021;11:e044591.
[27] Crafoord M-T, Fjell M, Sundberg K, Nilsson M, Langius-Eklöf A. Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study. J Med Internet Res. 2020;22:e17058.
[28] Moloczij N, Krishnasamy M, Butow P, Hack TF, Stafford L, Jefford M, et al. Barriers and facilitators to the implementation of audio-recordings and question prompt lists in cancer care consultations: A qualitative study. Patient Educ Couns. 2017;100:1083–91.
[29] Esch T, Mejilla R, Anselmo M, Podtschaske B, Delbanco T, Walker J. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open. 2016;6:e010034.
[30] Tilly AE, Ellis GK, Chen JS, Manda A, Salima A, Mtangwanika A, et al. Implementation and Evaluation of Educational Videos to Improve Cancer Knowledge and Patient Empowerment. JCO Glob Oncol. 2022;8:e2100315.
[31] Laird-Gion J, Kelley-Hedgepeth A, Lee Lewis D. Virtual patient workshops: A tool for education, community, and empowerment in patients with postural orthostatic tachycardia syndrome. Heart Rhythm O2. 2022;3:211–2.
[32] Lee JL, Frey M, Frey P, Hollin IL, Wu AW. Seeing is Engaging: Vlogs as a Tool for Patient Engagement. Patient. 2017;10:267–70.
[33] Dalal AK, Piniella N, Fuller TE, Pong D, Pardo M, Bessa N, et al. Evaluation of electronic health record-integrated digital health tools to engage hospitalized patients in discharge preparation. J Am Med Inform Assoc. 2021;28:704–12.
[34] Bennett WL, Pitts S, Aboumatar H, Sharma R, Smith BM, Das A, et al. Strategies for Patient, Family, and Caregiver Engagement. Agency for Healthcare Research and Quality (US); 2020.
[35] Nikiphorou E, Santos EJF, Marques A, Böhm P, Bijlsma JW, Daien CI, et al. 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis. Ann Rheum Dis. 2021;80:1278–85.
[36] Lin J-H, Huang Y-K, Lin K-D, Hsu Y-J, Huang W-F, Huang H-L. Randomized Controlled Trial on Effects of a Brief Clinical-Based Intervention Involving Planning Strategy on Self-Care Behaviors in Periodontal Patients in Dental Practice. Int J Environ Res Public Health. 2019;16:E3838.
[37] McBain H, Shipley M, Newman S. The impact of self-monitoring in chronic illness on healthcare utilisation: a systematic review of reviews. BMC Health Serv Res. 2015;15:565.
[38] Kwan YH, Yoon S, Tan CS, Tai BC, Tan WB, Phang JK, et al. EMPOWERing Patients with Diabetes Using Profiling and Targeted Feedbacks Delivered Through Smartphone App and Wearable (EMPOWER): Protocol for a Randomized Controlled Trial on Effectiveness and Implementation. Front Public Health. 2022;10:805856.
[39] Irizarry T, DeVito Dabbs A, Curran CR. Patient Portals and Patient Engagement: A State of the Science Review. J Med Internet Res. 2015;17:e148.
[40] Nickel S, Trojan A, Kofahl C. Involving self-help groups in health-care institutions: the patients’ contribution to and their view of “self-help friendliness” as an approach to implement quality criteria of sustainable co-operation. Health Expect. 2017;20:274–87.
[41] Bosworth HB, Powers BJ, Oddone EZ. Patient self-management support: novel strategies in hypertension and heart disease. Cardiol Clin. 2010;28:655–63.
[42] Elbel GK, Parthe J, Stöckel F, Posern S, Chirila D. Boosting patient empowerment and motivational pull Achieving the next level in a gamified health environment. Deloitte; 2015.
[43] Lopez-Olivo MA, Minnix JA, Fox JG, Nishi SPE, Lowenstein LM, Maki KG, et al. Smoking cessation and shared decision-making practices about lung cancer screening among primary care providers. Cancer Med. 2021;10:1357–65.
[44] Kane HL, Halpern MT, Squiers LB, Treiman KA, McCormack LA. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin. 2014;64:377–88.
[45] Seely KD, Higgs JA, Butts L, Roe JM, Merrill CB, Zapata I, et al. The “teach-back” method improves surgical informed consent and shared decision-making: a proof of concept study. Patient Saf Surg. 2022;16:33.
[46] Milne H, Huby G, Buckingham S, Hayward J, Sheikh A, Cresswell K, et al. Does sharing the electronic health record in the consultation enhance patient involvement? A mixed-methods study using multichannel video recording and in-depth interviews in primary care. Health Expect. 2016;19:602–16.
[47] Volk RJ, Leal VB, Jacobs LE, Wolf AMD, Brooks DD, Wender RC, et al. From guideline to practice: New shared decision-making tools for colorectal cancer screening from the American Cancer Society. CA Cancer J Clin. 2018;68:246–9.
[48] Pena JL, Gil OM. e-Health for patient empowerment in Europe. Madrid: Ministry of Health and Consumer Affairs; 2007.
[49] Baines R, Tredinnick-Rowe J, Jones R, Chatterjee A. Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review. J Med Internet Res. 2020;22:e19375.
[50] Seljelid B, Varsi C, Solberg Nes L, Stenehjem A-E, Bollerslev J, Børøsund E. Content and system development of a digital patient-provider communication tool to support shared decision making in chronic health care: InvolveMe. BMC Med Inform Decis Mak. 2020;20:46.
[51] Koopman RJ, Wakefield BJ, Johanning JL, Keplinger LE, Kruse RL, Bomar M, et al. Implementing home blood glucose and blood pressure telemonitoring in primary care practices for patients with diabetes: lessons learned. Telemed J E Health. 2014;20:253–60.
[52] Stacey D, Kryworuchko J, Belkora J, Davison BJ, Durand M-A, Eden KB, et al. Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S11.
[53] Nass C, Steuer J, Siminoff E. Computer are social actors. 1994.
[54] Gambino A, Fox J, Ratan RA. Building a Stronger CASA: Extending the Computers Are Social Actors Paradigm. Human-Machine Communication. 2020;71–86.
[55] Elwyn G. The three talk model of shared decision making. In: Elwyn G, Edwards A, Thompson R, editors. Shared Decision Making in Health Care: Achieving evidence-based patient choice. Oxford University Press; 2016. p. 0.
[56] D’Alfonso S, Lederman R, Bucci S, Berry K. The Digital Therapeutic Alliance and Human-Computer Interaction. JMIR Ment Health. 2020;7:e21895.
[57] Harper S. The capacity of social security and health care institutions to adapt to an ageing world. International Social Security Review. 2010;63:177–96.
[58] Bensing J, Verheul W, Dulmen AM. Patient anxiety in the medical encounter: A study of verbal and nonverbal communication in general practice. Health Education. 2008;108:373–83.
[59] Wang X, Luan W. Research progress on digital health literacy of older adults: A scoping review. Frontiers in Public Health. 2022;10.
[60] Iatraki G, Kondylakis H, Koumakis L, Chatzimina M, Kazantzaki E, Marias K, et al. Personal Health Information Recommender: implementing a tool for the empowerment of cancer patients. Ecancermedicalscience. 2018;12:851.
[61] Scalia P, Durand M-A, Forcino RC, Schubbe D, Barr PJ, O’Brien N, et al. Implementation of the uterine fibroids Option Grid patient decision aids across five organizational settings: a randomized stepped-wedge study protocol. Implement Sci. 2019;14:88.
[62] Al-Itejawi, H.H.M. et al. (2017) ‘Effectiveness, cost-utility and implementation of a decision aid for patients with localised prostate cancer and their partners: study protocol of a stepped-wedge cluster randomised controlled trial’, BMJ open, 7(9), p. e015154.
[63] de Angst, I.B. et al. (2020) ‘Development and usability testing of a multi-criteria value clarification methods for patients with localized prostate cancer’, Health Informatics Journal, 26(1), pp. 486–498.
[64] Bekker, H.L. et al. (2013) ‘Do personal stories make patient decision aids more effective? A critical review of theory and evidence’, BMC medical informatics and decision making, 13 Suppl 2, p. S9
[65] van Belle, E. et al. (2018) ‘Tailoring of the Tell-us Card communication tool for nurses to increase patient participation using Intervention Mapping’, Journal of Clinical Nursing, 27(3–4), pp. 621–630.
[66] Durand, M.-A. et al. (2021) ‘What matters most: Randomized controlled trial of breast cancer surgery conversation aids across socioeconomic strata’, Cancer, 127(3), pp. 422–436.
[67] Garcia-Retamero, R., Okan, Y. and Cokely, E.T. (2012) ‘Using visual aids to improve communication of risks about health: a review’, TheScientificWorldJournal, 2012, p. 562637.
[68] Hoffman, J.R. et al. (2006) ‘The roulette wheel: an aid to informed decision making’, PLoS medicine, 3(6), p. e137.
[69] Montori, V.M. et al. (2007) ‘Creating a Conversation: Insights from the Development of a Decision Aid’, PLoS Medicine, 4(8), p. e233.
[70] Ramon, S. (2021) ‘Family Group Conferences as a Shared Decision-Making Strategy in Adults Mental Health Work’, Frontiers in Psychiatry, 12, p. 663288.
[71] Rivest, J. et al. (2020) ‘Engaging patients as partners in cancer care: An innovative strategy to implement screening for distress?’, Canadian Oncology Nursing Journal = Revue Canadienne De Nursing Oncologique, 30(3), pp. 180–185.
[72] Rochon, D. et al. (2014) ‘Elderly patients’ experiences using adaptive conjoint analysis software as a decision aid for osteoarthritis of the knee’, Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 17(6), pp. 840–851.
[73] Schladen, M.M. et al. (2017) ‘Exploration of the Personal Health Record as a Tool for Spinal Cord Injury Health Self-Management and Coordination of Care’, Topics in Spinal Cord Injury Rehabilitation, 23(3), pp. 218–225.
[74] Wright, S.P. et al. (2003) ‘Uptake of self-management strategies in a heart failure management programme’, European Journal of Heart Failure, 5(3), pp. 371–380.