Download PDF
Appl Clin Inform 2019; 10(05): 841-848
DOI: 10.1055/s-0039-1700536
State of the Art/Best Practice Paper
Georg Thieme Verlag KG Stuttgart · New York

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Hannah K. Galvin
1   Lahey Health, Burlington, Massachusetts, United States
,
Carolyn Petersen
2   Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, United States
,
Vignesh Subbian
3   Department of Biomedical Engineering, University of Arizona, Tucson, Arizona, United States
,
Anthony Solomonides
4   Department of Systems and Industrial Engineering, University of Arizona, Tucson, Arizona, United States
› Author Affiliations Funding Authors' efforts were partially supported by National Science Foundation under grant #1838745 (to V.S.), Patient-Centered Outcomes Research Institute clinical data research network funding (to A.S.), and National Institutes of Health-National Center for Advancing Translational Sciences funding for the Institute of Translational Medicine at Rush (to A.S.).
Further Information

Publication History

17 June 2019

28 August 2019

Publication Date:
06 November 2019 (online)

   Permissions and Reprints

Abstract

Authentic inclusion and engagement of behavioral health patients in their care delivery and in the process of scientific discovery are often challenged in the health care system. Consequently, there is a growing need to engage with and better serve the needs of behavioral health patients, particularly by leveraging health information technologies. In this work, we present rationale and strategies for improving patient engagement in this population in research and clinical care. First, we describe the potential for creating meaningful patient–investigator partnerships in behavioral health research to allow for cocreation of knowledge with patients. Second, in the context of behavioral health services, we explore the utility of sharing clinical notes to promote patients' agency in care delivery. Both lines of inquiry are centered in a Learning Health System model for behavioral health, where patients are agents in enhancing the therapeutic alliance and advancing the process of knowledge generation. Recommendations include genuinely democratizing the health care system and biomedical research enterprise through patient-centered information technologies such as patient portals. In research and technology development, we recommend seeking and tailoring behavioral health patients' involvement to their abilities, promoting patient input in data analysis plans, evaluating research and informatics initiatives for patients and clinicians, and sharing success and research findings with patients. In clinical practice, we recommend encouraging patients to read behavioral health notes on portals, engaging in proactive communication regarding note content, assessing outcomes including stress and anxiety in response to note content, and working with technology providers to support note-sharing governance and deployment.

Keywords

mental health - patient participation - medical records - biomedical research - patient engagement - patient collaboration - OpenNotes - shared chart

Authors' Contributions

H.K.G., C.P., V.S., and A.S. wrote the first draft and revised the manuscript. This work is a collaborative effort between the AMIA Ethical, Legal, and Social Issues Working Group and the Mental Health Informatics Working Group.


Protection of Human and Animal Subjects

This work involved no humans or animals, and so was not subject to institutional review board oversight.


 

  • References

  • 1 National Institute of Mental Health. Mental Health. National Institute of Mental Health; 2019. Available at: https://www.nimh.nih.gov/health/statistics/mental-illness.shtml . Accessed February 3, 2019
    PubMedGoogle Scholar
  • 2 United States Census Bureau. Quick Facts. United States Census Bureau; 2018. Available at: https://www.census.gov/quickfacts/fact/table/US/PST045218 . Accessed June 12, 2019
    PubMedGoogle Scholar
  • 3 Rössler W. The stigma of mental disorders: a millennia-long history of social exclusion and prejudices. EMBO Rep 2016; 17 (09) 1250-1253
    PubMedGoogle Scholar
  • 4 Faulkner A, Thomas P. User-led research and evidence-based medicine. Br J Psychiatry 2002; 180: 1-3
    CrossrefPubMedGoogle Scholar
  • 5 Institute of Medicine. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America; 2013. Available at: https://www.nap.edu/catalog/13444/best-care-at-lower-cost-the-path-to-continuously-learning . Accessed July 16, 2019
    PubMedGoogle Scholar
  • 6 Rubin JC, Silverstein JC, Friedman CP. , et al. Transforming the future of health together: the learning health systems consensus action plan. Learn Health Syst 2018; 2 (03) e10055
    PubMedGoogle Scholar
  • 7 Roos EC. Patients in research: still many roadblocks. BMJ 2018; 363: k4387
    PubMedGoogle Scholar
  • 8 Maguire K, Britten N. “How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable. Soc Sci Med 2017; 183: 62-69
    CrossrefPubMedGoogle Scholar
  • 9 Oldfield BJ, Harrison MA, Genao I. , et al. Patient, family, and community advisory councils in health care and research: a systematic review. J Gen Intern Med 2019; 34 (07) 1292-1303
    CrossrefPubMedGoogle Scholar
  • 10 Salvetti M, Lubetzki C, Kapoor R. , et al. Steps toward collective sustainability in biomedical research. Trends Mol Med 2018; 24 (05) 429-432
    CrossrefPubMedGoogle Scholar
  • 11 Bonevski B, Randell M, Paul C. , et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 2014; 14: 42
    CrossrefPubMedGoogle Scholar
  • 12 Suurmond J, Torensma M. Involving underserved patient populations in research. BMJ 2018; 363: k4385
    PubMedGoogle Scholar
  • 13 Paskett ED, Reeves KW, McLaughlin JM. , et al. Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience. Contemp Clin Trials 2008; 29 (06) 847-861
    CrossrefPubMedGoogle Scholar
  • 14 Ewalds Mulliez AP, Pomey MP, Bordeleau J, Desbiens F, Pelletier JF. A voice for the patients: evaluation of the implementation of a strategic organizational committee for patient engagement in mental health. PLoS One 2018; 13 (10) e0205173
    CrossrefPubMedGoogle Scholar
  • 15 Woodall A, Morgan C, Sloan C, Howard L. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers?. BMC Psychiatry 2010; 10: 103
    CrossrefPubMedGoogle Scholar
  • 16 Domecq JP, Prutsky G, Elraiyah T. , et al. Patient engagement in research: a systematic review. BMC Health Serv Res 2014; 14: 89
    CrossrefPubMedGoogle Scholar
  • 17 Brett J, Staniszewska S, Mockford C. , et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2014; 17 (05) 637-650
    CrossrefPubMedGoogle Scholar
  • 18 Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract 2017; 34 (03) 290-295
    PubMedGoogle Scholar
  • 19 Bishop AC, Elliott MJ, Cassidy C. Moving patient-oriented research forward: thoughts from the next generation of knowledge translation researchers. Res Involv Engagem 2018; 4: 23
    CrossrefPubMedGoogle Scholar
  • 20 Gray-Burrows KA, Willis TA, Foy R. , et al. Role of patient and public involvement in implementation research: a consensus study. BMJ Qual Saf 2018; 27 (10) 858-864
    CrossrefPubMedGoogle Scholar
  • 21 Leese J, Macdonald G, Kerr S. , et al. ‘Adding another spinning plate to an already busy life’. Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting. BMJ Open 2018; 8 (08) e022154
    CrossrefPubMedGoogle Scholar
  • 22 Jørgensen K, Rendtorff JD, Holen M. How patient participation is constructed in mental health care: a grounded theory study. Scand J Caring Sci 2018; 32 (04) 1359-1370
    CrossrefPubMedGoogle Scholar
  • 23 Nowell WB, Curtis JR, Crow-Hercher R. Patient governance in a patient-powered research network for adult rheumatologic conditions. Med Care 2018; 56 (Suppl 10 Suppl 1): S16-S21
    CrossrefPubMedGoogle Scholar
  • 24 Stewart RJ, Caird J, Oliver K, Oliver S. Patients' and clinicians' research priorities. Health Expect 2011; 14 (04) 439-448
    CrossrefPubMedGoogle Scholar
  • 25 Gillard SG, Edwards C, Gibson SL, Owen K, Wright C. Introducing peer worker roles into UK mental health service teams: a qualitative analysis of the organisational benefits and challenges. BMC Health Serv Res 2013; 13: 188
    CrossrefPubMedGoogle Scholar
  • 26 Rose D, MacDonald D, Wilson A, Crawford M, Barnes M, Omeni E. Service user led organisations in mental health today. J Ment Health 2016; 25 (03) 254-259
    CrossrefPubMedGoogle Scholar
  • 27 Rollman BL, Herbeck Belnap B, Abebe KZ. , et al. Effectiveness of online collaborative care for treating mood and anxiety disorders in primary care: a randomized clinical trial. JAMA Psychiatry 2018; 75 (01) 56-64
    CrossrefPubMedGoogle Scholar
  • 28 Cohen RM, Greenberg JM, IsHak WW. Incorporating multidimensional patient-reported outcomes of symptom severity, functioning, and quality of life in the Individual Burden of Illness Index for Depression to measure treatment impact and recovery in MDD. JAMA Psychiatry 2013; 70 (03) 343-350
    CrossrefPubMedGoogle Scholar
  • 29 Steiner AJ, Recacho J, Vanle B. , et al. Quality of life, functioning, and depressive symptom severity in older adults with major depressive disorder treated with citalopram in the STAR*D study. J Clin Psychiatry 2017; 78 (07) 897-903
    CrossrefPubMedGoogle Scholar
  • 30 Yamaguchi S, Ojio Y, Koike J. , et al. Associations between readmission and patient-reported measures in acute psychiatric inpatients: a study protocol for a multicenter prospective longitudinal study (the ePOP-J study). Int J Ment Health Syst 2019; 13: 40
    CrossrefPubMedGoogle Scholar
  • 31 Owen JE, Kuhn E, Jaworski BK. , et al. VA mobile apps for PTSD and related problems: public health resources for veterans and those who care for them. mHealth 2018; 4: 28
    CrossrefPubMedGoogle Scholar
  • 32 Sylvia LG, Hearing CM, Montana RE. , et al. MoodNetwork: an innovative approach to patient-centered research. Med Care 2018; 56 (Suppl 10 Suppl 1): S48-S52
    CrossrefPubMedGoogle Scholar
  • 33 Patient-Centered Research Outcomes Institute. What You Need To Know To Apply. Patient-Centered Outcomes Research Institute; 2019 . Available at: https://www.pcori.org/funding-opportunities/what-you-need-know-apply . Accessed April 9, 2019
    PubMedGoogle Scholar
  • 34 Faulkner M, Alikhaani J, Brown L. , et al. Exploring meaningful patient engagement in ADAPTABLE (aspirin dosing: a patient-centric trial assessing benefits and long-term effectiveness). Med Care 2018; 56 (Suppl 10 Suppl 1): S11-S15
    CrossrefPubMedGoogle Scholar
  • 35 Kim KK, Khodyakov D, Marie K. , et al. A novel stakeholder engagement approach for patient-centered outcomes research. Med Care 2018; 56 (Suppl 10 Suppl 1): S41-S47
    CrossrefPubMedGoogle Scholar
  • 36 Haynes SC, Rudov L, Nauman E, Hendryx L, Angove RSM, Carton T. Engaging stakeholders to develop a patient-centered research agenda: lessons learned from the Research Action for Health Network (REACHnet). Med Care 2018; 56 (Suppl. 10) S27-S32
    CrossrefPubMedGoogle Scholar
  • 37 Jonas D, Mansfield AJ, Curtis P. , et al. Identifying Priorities for Patient-Centered Outcomes Research for Serious Mental Illness. Rockville, MD: Agency for Healthcare Research and Quality (US); 2011 . Report No. 11–EHC066-EF
    PubMedGoogle Scholar
  • 38 Lear SA. Patients in research: one step in a long path. BMJ 2018; 363: k4386
    PubMedGoogle Scholar
  • 39 Truman C, Raine P. Experience and meaning of user involvement: some explorations from a community mental health project. Health Soc Care Community 2002; 10 (03) 136-143
    CrossrefPubMedGoogle Scholar
  • 40 Tambuyzer E, Pieters G, Van Audenhove C. Patient involvement in mental health care: one size does not fit all. Health Expect 2014; 17 (01) 138-150
    CrossrefPubMedGoogle Scholar
  • 41 MacLean S, MacKie C, Hatcher S. Involving people with lived experience in research on suicide prevention. CMAJ 2018; 190 (Suppl): S13-S14
    CrossrefPubMedGoogle Scholar
  • 42 Hendrikoff L, Kambeitz-Ilankovic L, Pryss R. , et al. Prospective acceptance of distinct mobile mental health features in psychiatric patients and mental health professionals. J Psychiatr Res 2019; 109: 126-132
    CrossrefPubMedGoogle Scholar
  • 43 American Psychiatric Association. App Advisor Expert Panel. American Psychiatric Association; 2019 . Available at: https://www.psychiatry.org/psychiatrists/practice/mental-health-apps/app-advisor-expert-panel . Accessed July 16, 2019
    PubMed
  • 44 Strudwick G, Kuziemsky C, Booth RG. , et al. Engaging patients and family members in the evaluation of a mental health patient portal: protocol for a mixed-methods study. BMJ Open 2018; 8 (08) e025508
    CrossrefPubMedGoogle Scholar
  • 45 Strudwick G, Leung K, McLean D. , et al. (2019) Patient and Family Engagement in Health Information Technology Initiatives: Findings of a Literature Review, Focus Groups and Symposium. Centre for Addiction and Mental Health; 2019. Available at https://www.camh.ca/-/media/files/pdfs—reports-and-books—research/camh-health-it-initiative-28mar2018-6002.pdf . Accessed April 9, 2019
    PubMed
  • 46 Rutter D, Manley C, Weaver T, Crawford MJ, Fulop N. Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London. Soc Sci Med 2004; 58 (10) 1973-1984
    CrossrefPubMedGoogle Scholar
  • 47 Laitila M, Nummelin J, Kortteisto T, Pitkänen A. Service users' views regarding user involvement in mental health services: a qualitative study. Arch Psychiatr Nurs 2018; 32 (05) 695-701
    CrossrefPubMedGoogle Scholar
  • 48 Storm M, Edwards A. Models of user involvement in the mental health context: intentions and implementation challenges. Psychiatr Q 2013; 84 (03) 313-327
    CrossrefPubMedGoogle Scholar
  • 49 Dixon LB, Holoshitz Y, Nossel I. Treatment engagement of individuals experiencing mental illness: review and update. World Psychiatry 2016; 15 (01) 13-20
    CrossrefPubMedGoogle Scholar
  • 50 Brady F, Warnock-Parkes E, Barker C, Ehlers A. Early in-session predictors of response to trauma-focused cognitive therapy for posttraumatic stress disorder. Behav Res Ther 2015; 75: 40-47
    CrossrefPubMedGoogle Scholar
  • 51 Jung E, Wiesjahn M, Rief W, Lincoln TM. Perceived therapist genuineness predicts therapeutic alliance in cognitive behavioural therapy for psychosis. Br J Clin Psychol 2015; 54 (01) 34-48
    CrossrefPubMedGoogle Scholar
  • 52 Stanhope V, Tondora J, Davidson L, Choy-Brown M, Marcus SC. Person-centered care planning and service engagement: a study protocol for a randomized controlled trial. Trials 2015; 16: 180
    CrossrefPubMedGoogle Scholar
  • 53 Delbanco T, Walker J, Bell SK. , et al. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med 2012; 157 (07) 461-470
    PubMedGoogle Scholar
  • 54 Walker J, Leveille S, Bell S. , et al. OpenNotes after 7 years: patient experiences with ongoing access to their clinicians' outpatient visit notes. J Med Internet Res 2019; 21 (05) e13876
    CrossrefPubMedGoogle Scholar
  • 55 Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv 2017; 68 (05) 520-523
    CrossrefPubMedGoogle Scholar
  • 56 Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry 2016; 38: 89-93
    CrossrefPubMedGoogle Scholar
  • 57 Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res 2017; 19 (06) e208
    CrossrefPubMedGoogle Scholar
  • 58 Dobscha SK, Denneson LM, Pisciotta MK, Bourne DS, Chen JI, Philipps-Moses D, Woods SS. Predictors of viewing progress notes among users of VA's electronic health portal who receive mental health care. JAMIA Open 2018; 1 (01) 122-127
    CrossrefPubMedGoogle Scholar
  • 59 Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv 2018; 69 (05) 593-596
    CrossrefPubMedGoogle Scholar
  • 60 Kahn MW, Bell SK, Walker J, Delbanco T. . Let's show patients their mental health records. JAMA 2014; 311 (13) 1291-1292
    CrossrefPubMedGoogle Scholar
  • 61 OpenNotes. Mental health notes health systems list (direct communication). May 14, 2019
    PubMedGoogle Scholar
  • 62 Petersson L, Erlingsdóttir G. OpenNotes in Swedish psychiatric care (part 1): survey among psychiatric care professionals. JMIR Ment Health 2018; 5 (01) e11
    CrossrefPubMedGoogle Scholar
  • 63 Petersson L, Erlingsdóttir G. OpenNotes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health 2018; 5 (02) e10521
    CrossrefPubMedGoogle Scholar
  • 64 Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf 2016; 25 (08) 626-632
    CrossrefPubMedGoogle Scholar
  • 65 Breault LJ, Rittenbach K, Hartle K. , et al. People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada. Res Involv Engagem 2018; 4: 37
    CrossrefPubMedGoogle Scholar
  • 66 Teague S, Youssef GJ, Macdonald JA. , et al; SEED Lifecourse Sciences Theme. Retention strategies in longitudinal cohort studies: a systematic review and meta-analysis. BMC Med Res Methodol 2018; 18 (01) 151
    CrossrefPubMedGoogle Scholar
  • 67 Crocker JC, Ricci-Cabello I, Parker A. , et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ 2018; 363: k4738
    PubMedGoogle Scholar
  • 68 Bethell J, Commisso E, Rostad HM. , et al. Patient engagement in research related to dementia: a scoping review. Dementia 2018; 17 (08) 944-975
    CrossrefPubMedGoogle Scholar
  • 69 Gillard S, Simons L, Turner K, Lucock M, Edwards C. Patient and public involvement in the coproduction of knowledge: reflection on the analysis of qualitative data in a mental health study. Qual Health Res 2012; 22 (08) 1126-1137
    CrossrefPubMedGoogle Scholar
  • 70 Shippee ND, Domecq Garces JP, Prutsky Lopez GJ. , et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect 2015; 18 (05) 1151-1166
    CrossrefPubMedGoogle Scholar
  • 71 OpenNotes. Implementing OpenNotes: Improving Patient Access to Notes on Patient Portals: An OpenNotes White Paper. OpenNotes; 2018 . Available at http://www.opennotes.org/wp-content/uploads/2018/12/Implementing_OpenNotes_Improving_Patient_Access_to_Notes_on_Patient_Portals.pdf . Accessed January 19, 2019
    PubMedGoogle Scholar
  • 72 Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health 2019; 28 (01) 64-70
    CrossrefPubMedGoogle Scholar