Open Access Open Access  Restricted Access Subscription Access

The development of a patient and caregiver narrative archive to support patient-centered research

Kathleen M McTigue, David Fear, Ken Hunter, Sri Karanam, James Uhrig, Treva Alston, Stacey Dillon, Jenni Faust, Juliana Kim, Anthony LaRosa, Barbara Postol, Sylvia syu1@pitt.edu, Megan Hamm

Abstract


Background: Engaging patients and other stakeholders is a key tenet of patient-centered research, but can be challenging to implement. 

Objectives: To determine the feasibility of using patient narratives for informing comparative effectiveness research and engaging patients in the research process.

Research Design: Cross-sectional study.

Participants: The first 153 participants to share a story using the MyPaTH Story Booth protocol were, on average, aged 51 (18.8). Most were white (79%) or African American (13%) and well-educated.

Measures: Participants self-categorized their narratives according to the sort of health experience(s) described (e.g., diagnosis, doctor/patient communication), the anatomic locations of health problems discussed and the type of disorder or condition addressed. They also reported on whether they were interested in engaging in clinical research as a participant or stakeholder and their satisfaction with the study processes.

Results: The archived narratives addressed a wide range of health experiences of relevance to clinical researchers, most often medical treatment (82%), communication with healthcare team members (81%), diagnosis (64%), symptoms (61%), healthcare access (60%) and health decision-making (60%). Health problems related to diverse anatomic locations were addressed. Health conditions such as mental health concerns (35%), infections (23%) and cancers (20%) were often discussed. Among participants, 63% expressed interest in learning of opportunities for stakeholder engagement in research related to their stories. Ninety seven percent were very satisfied or satisfied with the MyPaTH Story Booth process. 

Conclusions: The narrative archive represents a unique resource for researchers interested in developing and carrying out patient-centered research projects to improve health or healthcare.

Keywords


Narratives, patient-centered outcomes research, person-centered healthcare, stakeholder engagement

Full Text:

PDF

References


Slutsky, J., Sheridan, S. & Selby, J. (2014). "Getting engaged". Journal of General Internal Medicine 29 (12) 1582-1583.

Pignone, M. (2012). Challenges to implementing patient-centered research. Annals of Internal Medicine 157 (6) 450-451.

Forsythe, L.P., Ellis, L.E., Edmundson, L., Sabharwal, R., Rein, A., Konopka, K. & Frank, L. (2016). Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned. Journal of General Internal Medicine 31 (1) 13-21.

Callon, M., Lascoumes, P. & Barthe, Y. (2009). Acting in an Unertain World: An Essay on Technical Democracy. Cambridge, MA: MIT Press.

Workman, T., Maurer, M. & Carman, K. (2013). Unresolved tensions in consumer engagement in CER: a US research perspective. Journal of Comparative Effectiveness Research 2 (2) 127-134.

Charon, R. (2001). Narrative medicine: form, function, and ethics. Annals of Internal Medicine 134 (1) 83-87.

Greenhalgh, T. & Hurwitz, B. (1999). Narrative based medicine: why study narrative? British Medical Journal 318 (7175) 48-50.

Rose, R., Chakraborty, S., Mason-Lai, P., Brocke, W., Page, S.A. & Cawthorpe, D. (2016). The storied mind: A meta-narrative review exploring the capacity of stories to foster humanism in health care. Journal of Hospital Administration 1, 52-61.

Nass, P., Levine, S. & Yancy, C. (2012). Methods for involving patients in topic generation for patient-centered comparative effectiveness research: An international perspective. Research Priorities White Paper (PCORI-SOL-RPWG-001) for the Patient-Centered Outcomes Research Institute (PCORI). Washington (DC): PCORI.

Evans, M., Shaw, A. & Sharp, D. (2012). Integrity in patients’ stories: ‘Meaning-making’ through narrative in supportive cancer care. European Journal of Integrative Medicine 4, e11-e18.

Houston, T.K., Allison, J.J., Sussman, M., Horn, W., Holt, C.L., Trobaugh, J., Salas, M., Pisu, M., Cuffee, Y.L., Larkin, D., Person, S.D., Barton, B., Kiefe, C.I. & Hullett, S. (2011). Culturally appropriate storytelling to improve blood pressure: a randomized trial. Annals of Internal Medicine 154 (2) 77-84.

Campbell, T., Dunt, D., Fitzgerald, J.L. & Gordon, I. (2015). The impact of patient narratives on self-efficacy and self-care in Australians with type 2 diabetes: stage 1 results of a randomized trial. Health Promotion International 30 (3) 438-448.

Goddu, A.P., Raffel, K.E. & Peek, M.E. (2015). A story of change: The influence of narrative on African-Americans with diabetes. Patient Education and Counseling 98 (8) 1017-1024.

Begley, A., Pritchard-Jones, K., Biriotti, M., Kydd, A., Burdsey, T. & Townsley, E. (2014). Listening to patients with cancer: using a literary-based research method to understand patient-focused care. BMJ Open 4 (10) e005550.

Janssen, A.L. & MacLeod, R.D. (2010). What can people approaching death teach us about how to care? Patient Education and Counseling 81 (2) 251-256.

Kumagai, A.K., Murphy, E.A. & Ross, P.T. (2009). Diabetes stories: use of patient narratives of diabetes to teach patient-centered care. Advances in Health Sciences Education Theory and Practice 14 (3) 315-326.

Swift, T.L. & Dieppe, P.A. (2005). Using expert patients' narratives as an educational resource. Patient Education and Counseling 57 (1) 115-121.

Amin, W., Tsui, F.R., Borromeo, C., Chuang, C.H., Espino, J.U., Ford, D. et al. (2014). PaTH: towards a learning system in the Mid-Atlantic region. Journal of the American Medical Informatics Association 21 (4) 633-636.

US National Library of Medicine. Health Topics 2017. Available at: https://medlineplus.gov/healthtopics.html.

Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., Konopka, K. & Daugherty, S. (2015). Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Quality of Life Research 24 (5) 1033-1041.

Mackie, T.I., Sheldrick, R.C., de Ferranti, S.D., Saunders, T., Rojas, E.G. & Leslie, L.K. (2017). Stakeholders' Perspectives on Stakeholder-engaged Research (SER): Strategies to Operationalize Patient-centered Outcomes Research Principles for SER. Medical Care 55 (1) 19-30.

Atkinson, S. & Rubinelli, S. (2012). Narrative in cancer research and policy: voice, knowledge and context. Critical Reviews in Oncology/Hematology 84 (Supplement 2) S11-S16.

Schenker, Y., Dew, M.A., Reynolds, C.F., Arnold, R.M., Tiver, G.A. & Barnato, A.E. (2015). Development of a post-intensive care unit storytelling intervention for surrogates involved in decisions to limit life-sustaining treatment. Palliative & Supportive Care 13 (3) 451-463.

Palacios, J.F., Salem, B., Hodge, F.S., Albarran, C.R., Anaebere, A. & Hayes-Bautista, T.M. (2015). Storytelling: A Qualitative Tool to Promote Health Among Vulnerable Populations. Journal of Transcultural Nursing 26 (4) 346-353.

Larkey, L.K., Lopez, A.M., Minnal, A. & Gonzalez, J. (2009). Storytelling for promoting colorectal cancer screening among underserved Latina women: a randomized pilot study. Cancer Control 16 (1) 79-87.

Moran, M.B., Frank, L.B., Chatterjee, J.S., Murphy, S.T. & Baezconde-Garbanati, L. (2016). A pilot test of the acceptability and efficacy of narrative and non-narrative health education materials in a low health literacy population. Journal of Communication in Healthcare 9 (1) 40-48.

Michielutte, R., Bahnson, J., Dignan, M.B. & Schroeder, E.M. (1992). The use of illustrations and narrative text style to improve readability of a health education brochure. Journal of Cancer Education 7 (3) 251-260.

Shapiro, J. (2011). Illness narratives: reliability, authenticity and the empathic witness. Medical Humanities 37 (2) 68-72.




DOI: http://dx.doi.org/10.5750/ejpch.v6i4.1546

Refbacks

  • There are currently no refbacks.