Observations of Daily Living: Putting the “Personal” in Personal Health Records Uba Backonja, RN, MS1, Katherine Kim, MPH, MBA2,4, Gail R. Casper RN, PhD1, Timothy Patton, BS3, Edmond Ramly, MS3, Patricia Flatley Brennan, RN PhD1,3, University of Wisconsin-Madison 1School of Nursing, 3College of Engineering, Madison, WI, United States; 2Health Equity Institute, San Francisco State University, San Francisco, CA United States, 4University of California Davis Betty Irene Moore School of Nursing, Davis, CA, United States Abstract Keeping individuals aware of their own health is a global challenge in health care. Observations of Daily Living (ODLs), cues to health that are derived from and personally meaningful to an individual, provide a detailed picture of one’s experience of health. Project HealthDesign, an 8-year initiative of the Robert Wood Johnson Foundation, is investigating ODLs and devising innovative ways of tracking them through personal health record deployment in diverse communities and health care settings. Nursing informatics knowledge base and skills, applied to the ODL challenge can accelerate their identification, capture, and interpretation, thus empowering individuals toward meaningful action and facilitating more robust information exchange between individuals and their health care providers. Introduction “…before people become patients, they need to be informed and empowered in promoting and protecting their own health.” -- World Health Organization (WHO) Agencies around the world, from the Institute of Medicine in the United States to the World Health Organization, have advocated for the right for patients to define health in their own terms1. As health management shifts from clinical settings and into the home, the concept of person-centered becomes enriched by ideas emerging from the person’s experience of health in every day living. To support this shift, people have sought tools for the purpose of recording and making sense of lived health experiences. Project HealthDesign (PHD), a Robert Wood Johnson Foundation funded initiative, championed a newly conceptualized personal health record (PHR) system as a means of providing those tools. Comprised of two rounds of funding, the initial round focused on the development of interoperative computer applications to collect, analyze and display meaningful health information to its users and make that data accessible to multiple applications through a common technical platform. The second round focuses on providing actionable information to patients/individuals, their informal caregivers and health care providers at the point of need, moving PHRs from mere datastores to platforms for personal action. Such tools enable patients to effectively assume a central role in their health care and health decisions. An insight that emerged from this first round of funding was that a major component of this expanded PHR was the inclusion of the individuals’ observations of daily living (ODLs). These ODLs are deeply personal, idiosyncratic sensory and behavioral indicators for the purposes of health monitoring and behavior modification2 . ODLS complement the more familiar signs and symptoms that patients already monitor. Examples of ODLs run the gamut from the moods teens experience in their dayto-day lives, to fluctuations in work- or home-related stress or to the exercise/eating patterns exhibited by a person with diabetes. The use of these ODLs can allow for insight into personal health through examining ODL patterns, yielding to a call for action to modify behaviors. This paper posits that not only are ODLs critical to appreciating an individual’s health status and inspiring behavior change, but also that nurses, aided by informatics tools are uniquely positioned to support the conceptualization, collection, interpretation, and sharing of the ODLs. Background The goal of Round 1 of Project HealthDesign was to create tools for patients, with development informed by the patients, and to promote patient engagement in their health, which has been shown to lead to positive
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health outcomes3,4. These tools enable the capture of personally relevant data and provide easy to access actionable information to the individual, their informal caregivers and their health care providers. The tools also allow for the capture of ODLs, which individuals use to gauge their health progression, to guide them in their choices of health actions, and to determine if the actions they have taken produce the desired effects. The ability to pay attention to and track personal health parameters has increased with the spread of personal technology. In the United States, 83% of all adults5 and about 75% of teens6 have a mobile phone. African-Americans and English-speaking Latinos are among the leading owners and users of mobile phones (87% and 80% respectively) and the mobile web7. Globally, it was estimated that mobile phone subscriptions would reach 5 billion, this number being driven by increased use of mobile phones in the developing world. The number using phones to access the Internet is also increasing8. With access to personal technology, there has been a growth in technology-based activities around patient generated data. Websites such as 23andMe (23andme.com), PatientsLikeMe (patientslikeme.com), and DiabetesMine (diabestesmine.com) have grown considerably, with thousands of individuals tracking and discussing their personal health. These individuals sometimes use professionally-defined and designed terms to record their experiences, and sometimes use idiosyncratic terms that reflect a personal experience of health and illness. Access to and use of these technologies grown in parallel with a global increased focus on health care beyond the clinical setting9. We believe that better understanding of ODLs, the personal, idiosyncratic terms and experiences, will provide a more rich and actionable picture of a person’s health. We report here a series of studies that contributed to the idea of Observations of Daily Living. ODLs: Generalizable beyond Project HealthDesign To explore the relevance of the concept of ODLs to a more general audience, a pilot study was undertaken with well young adults. A convenience sample of 10 healthy college students participated in open-ended interviews to elicit what indicators they used to gauge their own health states10. All participants identified individually-defined and meaningful ODLs, provided rich elaborations, and described the roles of ODLs in their lives. ODLs discussed included feelings (e.g., satisfaction after running), thoughts (e.g., ruminating about many things), sensations (e.g., fatigue, pain), and environment (e.g., current surroundings). ODLs were observed and/or tracked in a range of multiple times a day to whenever the ODL occurred (e.g., a few times a month). This pilot study affirmed that the idea of ODLs is generalizable and is seen in healthy individuals, bolstering the use of ODLs as a central component of PHD’s second round. Project HealthDesign – Round 2 Upon completion of the initial round, Project HealthDesign began to accumulate evidence that these ODLs might also be useful to clinicians for whom a richer picture of a patient’s health experience could yield insights that lead to new treatment regimens. Based on the premise that both patients and clinicians could benefit from systems that enable clinicians to keep in touch with their patients between office visits, a second round of funding was granted. The purpose was to further investigate ODLs, specifically the identification, interpretation, and display of ODLs with diverse populations. Equally important was the conduct of pilot evaluations of the impact of integrating ODLs into clinical practice. Five grantee teams were selected to undertake this work. A summary of the teams and their work follows. Carnegie Mellon University: Embedded Assessment – This team has developed and is evaluating sensor technologies that monitor the routine of elders who have arthritis and are at risk for cognitive decline, providing trustworthy data for long-term functional assessment and treatment. The team uses sensors to monitor routine tasks including medication-taking, making and receiving phone calls, and preparing coffee. Resulting sensor data may be used by elders to gain insight into their capabilities and by informal caregivers and clinicians to detect and better understand the individual’s changing cognitive and physical abilities. Deterioration in these capabilities that might otherwise result in an unsafe living situation or a transition to long-term care will be detected earlier; as a result intervention can be initiated earlier. RTI International and Virginia Commonwealth University: BreathEasy – This collaborative team has designed a personal health record (PHR) application that builds on the latest clinical guidelines for treatment and self-monitoring for patients with asthma. Patients interact with the application through smartphones, mobile devices and biomonitors to capture and report observations of daily living (ODLs) – such as use of controller and rescue medications, symptom levels and triggers, quality of life and mood.
NI2012: 11th International Congress on Nursing Informatics 7
Clinicians utilize a Web-based dashboard to quickly view their patients’ data, evaluate their health statuses and communicate any changes in treatment or monitoring. University of California at Berkeley: Crohnology.MD -- This project helps young adults who have Crohn's disease to create visually aided narratives representing their conditions and responses to treatment. Using smartphones and bio-measures, the project enables patients to track ODLs such as activity, pain levels and weight loss, alongside indications of anemia, depression and fatigue. The project also seeks to help patients create and communicate an effective patient narrative that can be shared and used to increase his/her quality of life and health over time. University of California at Irvine: FitBaby -- The FitBaby team created a mobile application for collecting information from high-risk infants and their primary caregivers that enables caregivers to more easily interact with clinicians to improve care and communication across provider type and specialty. Caregivers use the FitBaby technology to record ODLs like the baby’s temperament, communication, feeding and sleeping activities as well as the caregiver’s stress levels. Providing nearly real-time data to clinicians helps alert them to early signs of health problems, which is crucial with these high-risk infants. In Depth Case Study -- San Francisco State University: iN Touch In Depth Case Study: San Francisco State University’s iN Touch -- Minorities and low-income communities are disproportionately and alarmingly affected by obesity, a risk factor for diabetes, heart disease, and cancer. iN Touch examined whether and how use of an ODL application on the iPod Touch impacted the health of low-income youth who are managing obesity and mental health. The iN Touch study focused on low-income youth aged 13-24 with BMI in the overweight or obese range from three clinics in San Francisco: Mission High School Wellness Center (MHS) and San Francisco General Hospital’s Teen Clinic and Pediatric Healthy Lifestyles Clinic (SFGH). Participants were provided with an iPod Touch pre-loaded with a free texting application, free Wi-Fi finder, and a customized ODL tracking application from TheCarrot.com. The four ODL trackers for iN Touch were exercise, food, mood and socializing. Participants could also take photos, add notes, and select optional trackers (Figure 1).
Figure 1. Screen shots of the customized iN Touch ODL trackers from TheCarrot.com Participants met with a health coach in person or talked by phone or text and continued seeing their own providers as needed. During health coaching sessions, participants designed health action plans, reviewed ODL data, discussed successes and challenges and made new plans. The health coach had full access to participants’ ODL entries. Attending physicians in SFGH and the MHS school nurse had access to summaries through a portal. Analysis of pre-development focus groups revealed three common themes regarding ODLs among both youth and providers: Time, Trust and Tenacity, a more complete discussion of which is presented in a previous paper11. Youth were concerned about the amount of time entering ODLs would take, both per entry and total time commitment per day or week. They recommended that the effort required to enter data be no more than 5 clicks per entry and 5 minutes per day. Providers were concerned about the amount it would take to review ODL information and the potential to be overwhelmed by the volume of information.
NI2012: 11th International Congress on Nursing Informatics 8
Youth and providers had congruent concerns about the second theme of trust as well. The concerns stemmed not from privacy or confidentiality issues, but rather, how the information would be judged or used in care. The patients expressed worries that providers might “judge” their behavior while providers expressed concerns that patients might not be forthcoming about perceived negative behaviors11. Views related to the third theme, tenacity towards own views of health knowledge, diverged. Youth suggested that they did not like the ways in which practitioners gathered information, and they felt if practitioners gathered different information, they might be able to understand the patients’ behaviors and choices better. Practitioners, on the other hand, were concerned with having patients accurately answer questions about specific behaviors that they ask about in order to diagnose and recommend treatment. The choice of ODLs was also vetted as part of the focus groups. These findings were incorporated into the design of the technology and implementation of the program11. A mid-point focus group and interviews indicated that there might also be a wide variety of usage patterns. This was supported by preliminary analysis. Thirty-three intervention group participants who were enrolled between four and six months at the time of analysis recorded a total of 1,794 ODLs (range = 230 ODLs recorded, average = 54 ODLs recorded). The stories of two participants further demonstrate this variability. The first participant, Sarah (not her real name), recorded 117 ODLs over a six-month period. She also used the notes section to journal about her life and journey toward health. She recorded ODLs regularly at lunch or dinner. In addition to recording ODLs, she eliminated sodas and junk food and incorporated walking with hand weights and dancing several times a week. At the end of six months Sarah had lost over 20 pounds, but her size was not the only change12. I have confidence. I feel this is my year. Now if people want to come at me with drama, I’m just like, ‘I don’t care.’ I’m going across that stage. I’m going to a 4-year college. Twelfth grade is my serious year. In contrast, another participant, Mariela (not her real name), recorded 47 ODLs over a six-month period. Although she had not consistently recorded ODLs she did gain insights into her eating habits during the period that she was recording. At the end of six months Mariela had gained 8 pounds. At first I did it, but after awhile I kind of got off track a little bit…at first when I was doing it, it did help me see, I do eat when I’m bored and I’ve been trying to work on that. Discussion/Conclusion ODLs have the potential to improve health, healthcare and quality of life because they express an individual’s unique experiences in his/her own words. Technology-enabled collection of ODLs allows capture of the nuances of the context and environment in which patients live, their daily patterns, tactics for self-management, health decisions, and near-term results of these decisions. Unlike clinical terminologies, designed to categorize clinical and administrative information such as diagnoses, procedures and lab results, ODLs are designed for and with patients. As both clinical terminologies and ODLs advance, there may be opportunities to harmonize them and increase the value of information within each, as well as to facilitate information transmission and presentation to clinicians. Because of the quality and type of engagement that nursing has with patients—engagement that is patient-centered and involves collaboration with patients to meet health goals—nurses and nurse informaticists (NI) are uniquely positioned to work with individuals and clinicians to advance the understanding of the ODL concept, identify modes and technologies to capture, interpret, and display the ODLs as well as develop methods to provide meaningful reflection and feedback13. The application of ODLs in patient-centered PHR systems is in its infancy and there are several critical next steps needed to inform the field. Additional research is needed on design and efficacy of PHRs, summarization and visualization of potentially massive amounts of patient-generated data, and the use and usefulness of ODLs for particular types of clinicians and patients. These next steps are clearly within the scopes of practice for nurses and nurse informaticists14, 15, 16. The NI knowledge base and skills, applied to the ODL challenge can accelerate their identification, capture, interpretation and display, thus empowering individuals toward meaningful action and facilitating more robust information exchange between individuals and their health care providers.
NI2012: 11th International Congress on Nursing Informatics 9
Acknowledgements We acknowledge the support of the Robert Wood Johnson Foundation, the California Health Care Foundation, and the Graduate Partnership Program of the National Institute of Nursing Research. References 1. 2.
3. 4. 5.
6.
7. 8.
9.
10.
11.
12.
13. 14.
15.
16.
World Health Organization [Internet]. People-Centred Health Care: A policy framework. World Health Organization; 2007. 20 p. ISBN 978 92 9061 317 6. Project HealthDesign [Internet]. Madison, WI: Robert Wood Johnson Foundation; c2011. Observations of Daily Living; [date unknown] [cited 2011 September 07]; [about 2 screens]. Available from http://www.projecthealthdesign.org/resources/observations-of-daily-living McWilliam C. Patients, persons, or partners? Involving those with chronic disease in their care. Chronic Illness 2009; 5: 277-292. Ralston J, Revere D, Robins L, Goldberg H. Patient’s experience with a diabetes support programme based on an interactive electronic medical record: qualitative study. BMJ 2004; 328(7449): 1159 Smith A. Americans and their cell phones: Mobile devices help people solve problems and stave off boredom, but create some new challenges and annoyances. Washington, D.C.: Pew Research Center; 2011 Aug. 19 p. Available from http://pewinternet.org/Reports/2011/Cell-Phones.aspx Luxford K, Piper D, Dunbar N, Poole N. Patient-Centered Care: Improving quality and safety by focusing care on patients and consumers. Sydney, Australia: Australian Commission on Safety and Quality in Health Care; 2010 July. 81 p. Available from http://www.health.gov.au/internet/safety/publishing.nsf/Content/36AB9E5379378EBECA2577B3001 D3C2B/$File/PCCC-DiscussPaper.pdf Smith A. Mobile Access 2010. Washington, D.C.: Pew Research Center; 2010 July. 9 p. Available from http://pewinternet.org/~/media//Files/Reports/2010/PIP_Mobile_Access_2010.pdf International Telecommunication Union (ITU)[Internet]. Geneva, Switzerland: ITU; c2011. ITU sees 5 billion mobile subscriptions globally in 2010; [2010 Feb 15] [cited 2011 Sept 07]; [about 2 screens]. Available from http://www.itu.int/newsroom/press_releases/2010/06.html Luxford K, Piper D, Dunbar N, Poole N. Patient-Centered Care: Improving quality and safety by focusing care on patients and consumers. Sydney, Australia: Australian Commission on Safety and Quality in Health Care; 2010 July. 81 p. Available from http://www.health.gov.au/internet/safety/publishing.nsf/Content/36AB9E5379378EBECA2577B3001 D3C2B/$File/PCCC-DiscussPaper.pdf Backonja U, Patton T, Ramly E, Brennan PF. Talking with College Students about their Observations of Daily Living. Paper presented at: Midwest Nursing Research Society Annual Conference; 2011 March 26; Columbus, OH, USA. Sabee CM, Kim KK, Charles J, Logan H, Young E. Five Clicks, Five Minutes: Providing a Voice for Youth with Obesity and Depression with a Mobile Health Platform. Paper presented at: International Conference on Communication and Healthcare Annual Meeting; 2011 Oct 16-19; Chicago, IL, USA. Kim KK. Sarah’s Story: Six Months of Determination, Health Coaching and Observations of Daily Living [Internet] Madison, WI: Project HealthDesign/Robert Wood Johnson Foundation; c2011 [cited 2011 Sep 9] http://projecthealthdesign.typepad.com/project_health_design/2011/2008/sarahs-story-sixmonths-of-determination-health-coaching-and-observations-of-daily-living.html Ball MJ, Douglas JV, Walker PH, editors. Nursing Informatics: Where Technology and Caring Meet. 4th edition. New York, NY: Springer; 2011. American Nurses Association [Internet]. Silver Spring, MD: American Nurses Association; c2011. What is Nursing?; [date unknown] [cited 2011 September 10]; [about 2 screens]. Available from http://www.nursingworld.org/EspeciallyForYou/StudentNurses/WhatisNursing.aspx International Council of Nurses [Internet]. Geneva, Switzerland: International Council of Nurses; c2011. Nursing Definition; [2010 May 10] [cited 2011 September 10]; [about 1 screen]. Available from http://www.icn.ch/about-icn/icn-definition-of-nursing/ International Medical Informatics Association Nursing Informatics Special Interest Group[Internet]. Le Mont-sur-Lausanne, Switzerland: International Medical Informatics Association; c.2002-2006. Definition; [2009] [cited 2011 September 10]; [about 1 screen]. Available from http://www.imiani.org/index.php?option=com_content&task=view&id=27&Itemid=5
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NI2012: 11th International Congress on Nursing Informatics 6
health outcomes3,4. These tools enable the capture of personally relevant data and provide easy to access actionable information to the individual, their informal caregivers and their health care providers. The tools also allow for the capture of ODLs, which individuals use to gauge their health progression, to guide them in their choices of health actions, and to determine if the actions they have taken produce the desired effects. The ability to pay attention to and track personal health parameters has increased with the spread of personal technology. In the United States, 83% of all adults5 and about 75% of teens6 have a mobile phone. African-Americans and English-speaking Latinos are among the leading owners and users of mobile phones (87% and 80% respectively) and the mobile web7. Globally, it was estimated that mobile phone subscriptions would reach 5 billion, this number being driven by increased use of mobile phones in the developing world. The number using phones to access the Internet is also increasing8. With access to personal technology, there has been a growth in technology-based activities around patient generated data. Websites such as 23andMe (23andme.com), PatientsLikeMe (patientslikeme.com), and DiabetesMine (diabestesmine.com) have grown considerably, with thousands of individuals tracking and discussing their personal health. These individuals sometimes use professionally-defined and designed terms to record their experiences, and sometimes use idiosyncratic terms that reflect a personal experience of health and illness. Access to and use of these technologies grown in parallel with a global increased focus on health care beyond the clinical setting9. We believe that better understanding of ODLs, the personal, idiosyncratic terms and experiences, will provide a more rich and actionable picture of a person’s health. We report here a series of studies that contributed to the idea of Observations of Daily Living. ODLs: Generalizable beyond Project HealthDesign To explore the relevance of the concept of ODLs to a more general audience, a pilot study was undertaken with well young adults. A convenience sample of 10 healthy college students participated in open-ended interviews to elicit what indicators they used to gauge their own health states10. All participants identified individually-defined and meaningful ODLs, provided rich elaborations, and described the roles of ODLs in their lives. ODLs discussed included feelings (e.g., satisfaction after running), thoughts (e.g., ruminating about many things), sensations (e.g., fatigue, pain), and environment (e.g., current surroundings). ODLs were observed and/or tracked in a range of multiple times a day to whenever the ODL occurred (e.g., a few times a month). This pilot study affirmed that the idea of ODLs is generalizable and is seen in healthy individuals, bolstering the use of ODLs as a central component of PHD’s second round. Project HealthDesign – Round 2 Upon completion of the initial round, Project HealthDesign began to accumulate evidence that these ODLs might also be useful to clinicians for whom a richer picture of a patient’s health experience could yield insights that lead to new treatment regimens. Based on the premise that both patients and clinicians could benefit from systems that enable clinicians to keep in touch with their patients between office visits, a second round of funding was granted. The purpose was to further investigate ODLs, specifically the identification, interpretation, and display of ODLs with diverse populations. Equally important was the conduct of pilot evaluations of the impact of integrating ODLs into clinical practice. Five grantee teams were selected to undertake this work. A summary of the teams and their work follows. Carnegie Mellon University: Embedded Assessment – This team has developed and is evaluating sensor technologies that monitor the routine of elders who have arthritis and are at risk for cognitive decline, providing trustworthy data for long-term functional assessment and treatment. The team uses sensors to monitor routine tasks including medication-taking, making and receiving phone calls, and preparing coffee. Resulting sensor data may be used by elders to gain insight into their capabilities and by informal caregivers and clinicians to detect and better understand the individual’s changing cognitive and physical abilities. Deterioration in these capabilities that might otherwise result in an unsafe living situation or a transition to long-term care will be detected earlier; as a result intervention can be initiated earlier. RTI International and Virginia Commonwealth University: BreathEasy – This collaborative team has designed a personal health record (PHR) application that builds on the latest clinical guidelines for treatment and self-monitoring for patients with asthma. Patients interact with the application through smartphones, mobile devices and biomonitors to capture and report observations of daily living (ODLs) – such as use of controller and rescue medications, symptom levels and triggers, quality of life and mood.
NI2012: 11th International Congress on Nursing Informatics 7
Clinicians utilize a Web-based dashboard to quickly view their patients’ data, evaluate their health statuses and communicate any changes in treatment or monitoring. University of California at Berkeley: Crohnology.MD -- This project helps young adults who have Crohn's disease to create visually aided narratives representing their conditions and responses to treatment. Using smartphones and bio-measures, the project enables patients to track ODLs such as activity, pain levels and weight loss, alongside indications of anemia, depression and fatigue. The project also seeks to help patients create and communicate an effective patient narrative that can be shared and used to increase his/her quality of life and health over time. University of California at Irvine: FitBaby -- The FitBaby team created a mobile application for collecting information from high-risk infants and their primary caregivers that enables caregivers to more easily interact with clinicians to improve care and communication across provider type and specialty. Caregivers use the FitBaby technology to record ODLs like the baby’s temperament, communication, feeding and sleeping activities as well as the caregiver’s stress levels. Providing nearly real-time data to clinicians helps alert them to early signs of health problems, which is crucial with these high-risk infants. In Depth Case Study -- San Francisco State University: iN Touch In Depth Case Study: San Francisco State University’s iN Touch -- Minorities and low-income communities are disproportionately and alarmingly affected by obesity, a risk factor for diabetes, heart disease, and cancer. iN Touch examined whether and how use of an ODL application on the iPod Touch impacted the health of low-income youth who are managing obesity and mental health. The iN Touch study focused on low-income youth aged 13-24 with BMI in the overweight or obese range from three clinics in San Francisco: Mission High School Wellness Center (MHS) and San Francisco General Hospital’s Teen Clinic and Pediatric Healthy Lifestyles Clinic (SFGH). Participants were provided with an iPod Touch pre-loaded with a free texting application, free Wi-Fi finder, and a customized ODL tracking application from TheCarrot.com. The four ODL trackers for iN Touch were exercise, food, mood and socializing. Participants could also take photos, add notes, and select optional trackers (Figure 1).
Figure 1. Screen shots of the customized iN Touch ODL trackers from TheCarrot.com Participants met with a health coach in person or talked by phone or text and continued seeing their own providers as needed. During health coaching sessions, participants designed health action plans, reviewed ODL data, discussed successes and challenges and made new plans. The health coach had full access to participants’ ODL entries. Attending physicians in SFGH and the MHS school nurse had access to summaries through a portal. Analysis of pre-development focus groups revealed three common themes regarding ODLs among both youth and providers: Time, Trust and Tenacity, a more complete discussion of which is presented in a previous paper11. Youth were concerned about the amount of time entering ODLs would take, both per entry and total time commitment per day or week. They recommended that the effort required to enter data be no more than 5 clicks per entry and 5 minutes per day. Providers were concerned about the amount it would take to review ODL information and the potential to be overwhelmed by the volume of information.
NI2012: 11th International Congress on Nursing Informatics 8
Youth and providers had congruent concerns about the second theme of trust as well. The concerns stemmed not from privacy or confidentiality issues, but rather, how the information would be judged or used in care. The patients expressed worries that providers might “judge” their behavior while providers expressed concerns that patients might not be forthcoming about perceived negative behaviors11. Views related to the third theme, tenacity towards own views of health knowledge, diverged. Youth suggested that they did not like the ways in which practitioners gathered information, and they felt if practitioners gathered different information, they might be able to understand the patients’ behaviors and choices better. Practitioners, on the other hand, were concerned with having patients accurately answer questions about specific behaviors that they ask about in order to diagnose and recommend treatment. The choice of ODLs was also vetted as part of the focus groups. These findings were incorporated into the design of the technology and implementation of the program11. A mid-point focus group and interviews indicated that there might also be a wide variety of usage patterns. This was supported by preliminary analysis. Thirty-three intervention group participants who were enrolled between four and six months at the time of analysis recorded a total of 1,794 ODLs (range = 230 ODLs recorded, average = 54 ODLs recorded). The stories of two participants further demonstrate this variability. The first participant, Sarah (not her real name), recorded 117 ODLs over a six-month period. She also used the notes section to journal about her life and journey toward health. She recorded ODLs regularly at lunch or dinner. In addition to recording ODLs, she eliminated sodas and junk food and incorporated walking with hand weights and dancing several times a week. At the end of six months Sarah had lost over 20 pounds, but her size was not the only change12. I have confidence. I feel this is my year. Now if people want to come at me with drama, I’m just like, ‘I don’t care.’ I’m going across that stage. I’m going to a 4-year college. Twelfth grade is my serious year. In contrast, another participant, Mariela (not her real name), recorded 47 ODLs over a six-month period. Although she had not consistently recorded ODLs she did gain insights into her eating habits during the period that she was recording. At the end of six months Mariela had gained 8 pounds. At first I did it, but after awhile I kind of got off track a little bit…at first when I was doing it, it did help me see, I do eat when I’m bored and I’ve been trying to work on that. Discussion/Conclusion ODLs have the potential to improve health, healthcare and quality of life because they express an individual’s unique experiences in his/her own words. Technology-enabled collection of ODLs allows capture of the nuances of the context and environment in which patients live, their daily patterns, tactics for self-management, health decisions, and near-term results of these decisions. Unlike clinical terminologies, designed to categorize clinical and administrative information such as diagnoses, procedures and lab results, ODLs are designed for and with patients. As both clinical terminologies and ODLs advance, there may be opportunities to harmonize them and increase the value of information within each, as well as to facilitate information transmission and presentation to clinicians. Because of the quality and type of engagement that nursing has with patients—engagement that is patient-centered and involves collaboration with patients to meet health goals—nurses and nurse informaticists (NI) are uniquely positioned to work with individuals and clinicians to advance the understanding of the ODL concept, identify modes and technologies to capture, interpret, and display the ODLs as well as develop methods to provide meaningful reflection and feedback13. The application of ODLs in patient-centered PHR systems is in its infancy and there are several critical next steps needed to inform the field. Additional research is needed on design and efficacy of PHRs, summarization and visualization of potentially massive amounts of patient-generated data, and the use and usefulness of ODLs for particular types of clinicians and patients. These next steps are clearly within the scopes of practice for nurses and nurse informaticists14, 15, 16. The NI knowledge base and skills, applied to the ODL challenge can accelerate their identification, capture, interpretation and display, thus empowering individuals toward meaningful action and facilitating more robust information exchange between individuals and their health care providers.
NI2012: 11th International Congress on Nursing Informatics 9
Acknowledgements We acknowledge the support of the Robert Wood Johnson Foundation, the California Health Care Foundation, and the Graduate Partnership Program of the National Institute of Nursing Research. References 1. 2.
3. 4. 5.
6.
7. 8.
9.
10.
11.
12.
13. 14.
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