Use and impact of an online community for hospital patients

Abstract Objective Although patient-peer support technologies have demonstrated effectiveness in a variety of health contexts—including diabetes, weight loss, and cancer—less is known about how hospitalized patients can benefit from this support. We investigated the nature of peer support in the hospital and the impact this support had on patients’ hospital stays. Materials and Methods We created a technology, resembling an online health community, in which patients could exchange advice about their hospitalization. We deployed it at 1 pediatric hospital and 1 adult hospital. With 30 participants, we conducted bedside interviews, observed how they used the technology during their hospitalization, and completed follow-up phone interviews. Results Participants shared advice about several topics, including adjusting to the hospital and building relationships with providers. Contrary to concerns that such a system would primarily serve as a place for patients to “complain,” sentiment analysis showed that 23 of 36 (64%) of the shared advice reflected positive sentiment. Patients also reported positive impacts to their quality, safety, and hospital experience due to the inpatient peer support community. Discussion Participants benefited from peer support that transcended diagnoses and individual health conditions. The shared experience of being in the hospital was sufficient to yield valuable and practical peer support. Participants who did not contribute their own advice still experienced benefits from reading their peers’ advice. Conclusions Our study demonstrated the positive nature of peer advice exchanged, and the benefits of this advice on patients’ hospital stays. Inpatient peer support technologies could be an additional resource for patients to engage in their care.

[1]  Patricia C. Dykes,et al.  A web-based, patient-centered toolkit to engage patients and caregivers in the acute care setting: a preliminary evaluation , 2016, J. Am. Medical Informatics Assoc..

[2]  Desney S. Tan,et al.  Physician Attitudes about Patient-Facing Information Displays at an Urban Emergency Department. , 2010, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[3]  W. Pratt,et al.  Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians , 2011, Journal of medical Internet research.

[4]  Mark S. Ackerman,et al.  Collaborative help in chronic disease management: supporting individualized problems , 2012, CSCW.

[5]  David W. McDonald,et al.  Losing It Online: Characterizing Participation in an Online Weight Loss Community , 2014, GROUP.

[6]  Thomas E. Trail,et al.  Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs? , 2018, J. Am. Medical Informatics Assoc..

[7]  Andrew D. Auerbach,et al.  A randomized controlled trial to improve engagement of hospitalized patients with their patient portals , 2018, J. Am. Medical Informatics Assoc..

[8]  Wanda Pratt,et al.  Opportunities and Design Considerations for Peer Support in a Hospital Setting , 2017, CHI.

[9]  Antoine Geissbühler,et al.  Design Considerations for Social Fitness Applications: Comparing Chronically Ill Patients and Healthy Adults , 2017, CSCW.

[10]  Brittany Couture,et al.  Nurse, Patient, and Care Partner Perceptions of a Personalized Safety Plan Screensaver. , 2017, Journal of gerontological nursing.

[11]  Desney S. Tan,et al.  Designing patient-centric information displays for hospitals , 2010, CHI.

[12]  Richard J. Holden,et al.  Parental Perceptions of Displayed Patient Data in a PICU: An Example of Unintentional Empowerment* , 2019, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

[13]  Gretchen Purcell Jackson,et al.  Development of a Technology-Supported, Lay Peer-to-Peer Family Engagement Consultation Service in a Pediatric Hospital , 2018, AMIA.

[14]  C. V. van Uden-Kraan,et al.  Participation in online patient support groups endorses patients' empowerment. , 2009, Patient education and counseling.

[15]  Suzanne Bakken,et al.  Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact , 2016, J. Am. Medical Informatics Assoc..

[16]  Desney S. Tan,et al.  Identifying opportunities for inpatient-centric technology , 2010, IHI.

[17]  D. Gustafson,et al.  Lurking as an Active Participation Process: A Longitudinal Investigation of Engagement with an Online Cancer Support Group , 2014, Health communication.

[18]  Z. Demjén.  Laughing at cancer: Humour, empowerment, solidarity and coping online , 2016 .

[19]  Allison Druin,et al.  Technology probes: inspiring design for and with families , 2003, CHI '03.

[20]  K. Forbes,et al.  Family bedside orientations: An innovative peer support model to enhance a culture of family-centred care at the Stollery Children's Hospital. , 2017, Paediatrics & child health.

[21]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[22]  Wanda Pratt,et al.  Exploring the Design of an Inpatient Peer Support Tool: Views of Adult Patients , 2018, AMIA.

[23]  Jina Huh,et al.  Clinical Questions in Online Health Communities: The Case of "See your doctor" Threads , 2015, CSCW.

[24]  Cynthia J. Sieck,et al.  Empowering Patients during Hospitalization: Perspectives on Inpatient Portal Use , 2019, Applied Clinical Informatics.

[25]  Kai Zheng,et al.  Understanding Patient Questions about their Medical Records in an Online Health Forum: Opportunity for Patient Portal Design , 2017, AMIA.

[26]  Pooria Sarrami Foroushani,et al.  How do burn patients feel about peer support? Preliminary data from the SHARE program. , 2014, Journal of burn care & research : official publication of the American Burn Association.

[27]  L. Marsch,et al.  The future of mental health care: peer-to-peer support and social media , 2016, Epidemiology and Psychiatric Sciences.

[28]  Brittany Couture,et al.  Mixed-Methods Evaluation of Real-Time Safety Reporting by Hospitalized Patients and Their Care Partners: The MySafeCare Application , 2018, Journal of patient safety.

[29]  George Hripcsak,et al.  Engaging hospital patients in the medication reconciliation process using tablet computers , 2018, J. Am. Medical Informatics Assoc..

[30]  J. Frost,et al.  Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data , 2008, Journal of medical Internet research.

[31]  Nadee Goonawardene,et al.  Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review , 2017, Journal of medical Internet research.

[32]  Patricia C. Dykes,et al.  Implementation of acute care patient portals: recommendations on utility and use from six early adopters , 2018, J. Am. Medical Informatics Assoc..

[33]  J. Fleming,et al.  Patient perceptions of participation in group-based rehabilitation in an inpatient brain injury rehabilitation setting. , 2019, Patient education and counseling.

[34]  Edward Cutrell,et al.  "Yours is better!": participant response bias in HCI , 2012, CHI.

[35]  Lena Mamykina,et al.  Collective Sensemaking in Online Health Forums , 2015, CHI.

[36]  N. King,et al.  The Utility of Template Analysis in Qualitative Psychology Research , 2014, Qualitative research in psychology.

[37]  J. Carroll,et al.  A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication , 2013, Journal of medical Internet research.

[38]  E. Bernstam,et al.  Accuracy and self correction of information received from an internet breast cancer list: content analysis , 2006, BMJ : British Medical Journal.

[39]  Lena Mamykina,et al.  Investigating health management practices of individuals with diabetes , 2006, CHI.

[40]  Sarah A. Collins,et al.  Acute care patient portals: a qualitative study of stakeholder perspectives on current practices , 2017, J. Am. Medical Informatics Assoc..

[41]  Jina Huh,et al.  Health Vlogs as Social Support for Chronic Illness Management , 2014, ACM Trans. Comput. Hum. Interact..

[42]  Peter Hoonakker,et al.  Using an inpatient portal to engage families in pediatric hospital care , 2017, J. Am. Medical Informatics Assoc..

[43]  Lisa V. Grossman,et al.  Sharing Clinical Notes with Hospitalized Patients via an Acute Care Portal , 2017, AMIA.

[44]  B. Riegel,et al.  Is Individual Peer Support a Promising Intervention for Persons With Heart Failure? , 2004, The Journal of cardiovascular nursing.

[45]  J. Stoker,et al.  The Department of Health and Human Services. , 1999, Home healthcare nurse.

[46]  Jesper Kjeldskov,et al.  Diagnostic Agents: Collaborative Interpretation for Cardiac Patients at Home , 2018, CHI Extended Abstracts.

[47]  N. Parent,et al.  A randomized, controlled trial of vicarious experience through peer support for male first-time cardiac surgery patients: impact on anxiety, self-efficacy expectation, and self-reported activity. , 2000, Heart & lung : the journal of critical care.

[48]  Steven K. Feiner,et al.  Patient Experiences Using an Inpatient Personal Health Record , 2016, Applied Clinical Informatics.

[49]  M. T. Høybye,et al.  Online interaction. Effects of storytelling in an internet breast cancer support group , 2005, Psycho-oncology.

[50]  Neil S. Coulson,et al.  Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of 'lurkers' and 'posters' , 2010, Comput. Hum. Behav..

[51]  Emma Bell,et al.  The experience and impact of chronic disease peer support interventions: a qualitative synthesis. , 2013, Patient education and counseling.

[52]  Larry Davidson,et al.  Effectiveness of peer support in reducing readmissions of persons with multiple psychiatric hospitalizations. , 2011, Psychiatric services.