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St Catherine University SOPHIA Doctor of Nursing Practice Projects Nursing 5-2015 Capturing Muscular Dystrophy Patient Outcomes in the Electronic Health Record Kim Berlene Marben St Catherine University Follow this and additional works at: https://sophia.stkate.edu/dnp_projects Recommended Citation Marben, Kim Berlene (2015) Capturing Muscular Dystrophy Patient Outcomes in the Electronic Health Record Retrieved from Sophia, the St Catherine University repository website: https://sophia.stkate.edu/ dnp_projects/54 This Doctor of Nursing Practice Project is brought to you for free and open access by the Nursing at SOPHIA It has been accepted for inclusion in Doctor of Nursing Practice Projects by an authorized administrator of SOPHIA For more information, please contact sagray@stkate.edu Running head: CAPTURING OUTCOMES IN THE EHR Capturing Muscular Dystrophy Patient Outcomes in the Electronic Health Record Systems Change Project Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Nursing Practice St Catherine University St Paul, MN Kim Berlene Marben May, 2015 CAPTURING OUTCOMES IN THE EHR ST CATHERINE UNIVERSITY ST PAUL, MINNESOTA This is to certify that I have examined this Doctor of Nursing Practice systems change project written by Kim Berlene Marben and have found that it is complete and satisfactory in all respects, and that any and all revisions required by the final examining committee have been made Graduate Program Faculty Dr Nanette Hoerr Name of Faculty Project Advisor _Nanette Hoerr DNP, MPH, RN (Electronic Signature) _ Date DEPARTMENT OF NURSING CAPTURING OUTCOMES IN THE EHR Copyright Kim Berlene Marben, 2015 All Rights Reserved CAPTURING OUTCOMES IN THE EHR Acknowledgements I would like to thank Dr Linroth for opening doors to facilitate my growth, pushing me where I might not want to go but needed to, and having unwavering faith in my abilities Dr Linroth has been more than a site mentor She is a life-long friend, one of those few people you meet in life and know you are blessed Thank you, Dr Linroth, for partnering with me in your vision for persons with disability to be considered for their abilities Thank you to Dr Hoerr, my academic advisor, who has gently guided me to grow and led me to see my reflection as an advanced practice nursing leader Dr Hunt, my faculty reader, whose guidance at the early stages of project development helped to clarify the scope, then fostered the process to articulate this work To the neuromuscular clinic team, your commitment to caring for our patients has been unshakable The success of this project is your success; it could not have been accomplished without you We are better prepared to listen to our patient’s voice Thank you to each of my classmates in Cohort We have journeyed together, experienced loss, and strive for a better world CAPTURING OUTCOMES IN THE EHR Dedication Thank you to my parents, Robert and Betty Havens You’ve been a role model for me, not just in the way you raised me, but in the way you live your own life I’ve learned so much from you Like what it means to be truly giving and caring, how important it is to be fair, how to believe in myself and in my ideals To my children, Courtney and Sean, I could not be more proud of the adults you have become You have supported me along my academic journey and have been my rock Thanks for your supporting my dream CAPTURING OUTCOMES IN THE EHR Executive Summary In healthcare, creating value by improving quality while containing cost continues to challenge patients, providers, payers, politicians, and the public Embedding clinical practice guidelines into the electronic health record has been suggested to standardize best practice and improve patient satisfaction and outcomes Limited published studies have demonstrated whether clinical practice guidelines embedded into the EHR improve outcomes for persons with muscular dystrophy Sixty muscular dystrophy patients participated in this quantitative study by completing three psychosocial patient-reported outcome measure surveys exploring quality of life, patient activation, and depression risk screening This research explored the feasibility of collecting this patient data during routine scheduled clinic appointments Participant’s responded to three process evaluation questions; length of time, relative ease to complete, and location when completed Data analysis using SPSS summarized demographics; survey scores, and correlations between time, ease, and location Collection of patient-reported outcomes data was found to take approximately ten minutes, relatively easy to complete, and survey scores were available to the healthcare team at the time of the neuromuscular specialty clinic visit The electronic health record was modified to accommodate data entry and retrievability While this study successfully demonstrated initial exploration of capturing psychosocial outcomes within the electronic health record, additional health related measures selected from the muscular dystrophy clinical practice guidelines still need to be implemented CAPTURING OUTCOMES IN THE EHR Table of Contents Title Page………………………………………………………………………………… Copyright Page………………………………………………………………………… … Acknowledgments………………………………………………………………………… Dedication………………………………………………………………………………… Executive Summary…………………………………………………………….………… Table of Contents……………………………………………………………………… … List of Tables… ……………………………………………………………………… …10 List of Figures….……………………………………………………………………… …11 Chapter 1………………………………………………………………………………… 12 Background and Significance……………………………………………………… 13 Situations and Opportunities Leading to this Systems Change Project…………… 16 Congruence to the Organizations’ Strategic Plan……………………………… … 17 Systems Change and Social Justice………………………………………… …… 18 Research Purpose…………………………………………………………… …… 19 Research Question……………………………………………………… ……… 19 Chapter 2…………………………………………………………………………………… 20 Theoretical Framework…………………………………………………………… 20 Theoretical Models Description… ……………………………………………… 20 Application of Theory into Practice….…………………………………………… 23 Review of the Literature…………………………………………………………… 23 Outcome Measures, Lack of Data Integration into EHRs……… ……………… 24 Understanding Technology and Outcomes………………… …………………… 26 CAPTURING OUTCOMES IN THE EHR Comparison of Outcomes in Paper and Electronic Record….…………………… 27 Comparison of EHR Benefits and Challenges…………………………….……… 28 Decision Alerts in EHRs to Outcomes… … …………………………………… 29 Synthesis………… ……………………………………………………………… 30 Project Plan…………………………… ………………………………………… 32 Return on Investment……………………………………………………………… 33 Chapter 3…………………………………………………………………………………… 36 Method………………………………………………………………………… … 36 Sampling Strategy…………………………………………………………… …… 38 Ethical Considerations……………………………………………………… …… 39 Data Collection…………………………………………………………………… 41 Findings…………………………………………………………………………… 44 Summary…………………………………………………………………… …… 44 Chapter 4…………………………………………………………………………………… 45 Demographics……………………………………………………………………… 46 Study Findings and Discussion of Feasibility…………………………………… 46 Process Evaluation by Subject’s…………….…………………………………… 48 Team Member Program Evaluation…………………………….………………… 51 Correlation between Survey Questions………… … …………………………… 56 Summary…………………………………….…………………………………… 57 Chapter 5…………………………………………………………………………………… 59 Discussion of Findings, Recommendations, and Conclusions…………………… 59 Findings………………………………… ……………………………………… 59 CAPTURING OUTCOMES IN THE EHR Project Strengths and Limitations………………………………………………… 61 Discussion Recommendations to the Neuromuscular Clinic …………………… 62 Project Dissemination……………………………………………………………… 63 Evaluation Plan…………………………………………………………………… 65 Recommendations for Further Research………………………………………… 66 Role and Value of the DNP……………………………………………………… 67 Summary………… ……………………………………………………………… 62 References………………………………………………………………………………… 68 Appendix…………………………………………………………………………………… 78 Logic Model………………… …………………………………………………… 78 IRB Application Approval….……………………………………………………… 79 Information Sheet for Research ………………………………………………… 80 Questionnaire………………… ………………………………………………… 82 CAPTURING OUTCOME DATA IN THE EHR 69 References Albu, J., Sohler, N., Matti-Orozco, B., Sill, J., Baxter, D., Burke, G., & Young, E (2013) Expansion of electronic health record-based screening, prevention, and management of diabetes in New York City Preventing Chronic Disease, 10 Bakken, S., Cimino, J.J., & Hripcsak, G (2004) Promoting patient safety through enabling evidence-based practice through informatics Medical Care, 42(2), 49-56 Bray, P., Bundy, A., Ryan, M., North, K., & Burns, J (2011) Health status of boys with Duchenne muscular dystrophy: A parent’s perspective Journal of Paediatrics and Child Health, 47(8), 557-562 Bushby, K., Finkel, R., Birnkrant, D.J., Case, L.E., Clemens, P.R., Cripe, L., Kaul, A., Kinnett, K., McDonald, C., Pandya, S., Poysky, J., Shapiro, F., Tomezsko, J., and 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paper, iPad, or 1:1 interview and answer three additional questions about your experience completing these three surveys We anticipate that your time to participate in this research to answer three additional evaluation questions will take about five minutes or less We also would like your permission to access your medical record to gather information about your age, gender, diagnosis, and scores from the three questionnaires Risks and Benefits: The only risk is confidentiality of the data Measures are in place to protect your confidentiality There are no direct benefits to participation However, this research may help patient care in the future Confidentiality: The responses to the questionnaires are considered a part of your medical record and will be available to your medical team In any sort of report we might publish, we will not include any information that will make it possible to identify a subject Research records will be stored securely and accessible to only the study staff Voluntary Nature of the Study: Participation in this study is voluntary Your decision whether or not to participate will not affect your current or future relations with Gillette Children’s Specialty Healthcare If you decide to participate, you are free to not answer any question or withdraw at any time without affecting those relationships CAPTURING OUTCOME DATA IN THE EHR 81 Contacts and Questions: The researcher(s) conducting this study is (are): Kim Marben You may ask any questions you have now If you have questions later, you are encouraged to contact her at Gillette Children’s Specialty Healthcare, 651-229-3878 or kmarben@gillettechildrens.com The student’s faculty advisor at St Catherine’s University is Roberta Hunt, Ph.D and can be contacted at 651-6906851 or email rjhunt@stkate.edu If you have any questions or concerns regarding the study and would like to talk to someone other than the researcher(s), contact Patient Representative of the Quality Improvement Resources Department at Gillette Children’s Specialty Healthcare, 200 East University Avenue, St Paul MN 55101, Telephone 651-229-1706 or 1-800 719-4040 (toll free) or e-mail qualityrep@gillettechildrens.com You may also send feedback by going to: https://www.gillettechildrens.org/contact-us/ and completing the feedback form You will be given a copy of this information to keep for your records Statement of Consent: You are making a decision whether or not to participate Your signature indicates that you have read this information and your questions have been answered Even after signing this form please know that you may withdraw from the study I consent to participate in this study Signature of Participant Date Signature of Researcher Date CAPTURING OUTCOME DATA IN THE EHR 82 APPENDIX D Questionnaire Data Collection Subject Instruments and questions: World Health Organization Quality of Life (WHOQOL – BREF) - attached Patient Health Questionnaire – plus (PHQ2+) - attached Patient Health Questionnaire – (PHQ-9) - attached Patient Activation Measure (PAM) – attached Additional questions: On a Likert scale of 1-10 how easy or difficult was this to complete? _2 _3 _4 _6 _7 _8 _9 10 Easy Difficult How long did it take you to complete this questionnaire? _ minutes Location when you completed the questionnaire? (check appropriate location) Waiting room; _clinic room; _after appointment Additional information collected: Subject invitation log (patient name, MR#, date of clinic visit): a Number of patients consented: b Number of patient completing on paper: _ c Number of patients completing on iPad: _ d Number of patients completing using other method (1:1 interview): _; method(s) _ e Number of patients completing all questionnaires: f Number of patients completing and baseline measurements: WHOQOL-BREF; _average score; range _PHQ-2; response: # No; #Yes (If yes, proceed to PHQ-9) _PHQ-9; response: _