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Family attitudes toward a Personal Health Record (PHR) in a long term care facility P.M.D Nippak, W.W. Isaac, A. Geertsen, C. J. Ikeda-Douglas Introduction 1. A total of 65 families responded to the survey for a response rate of 35%. When asked about overall importance about access to electronic records, the majority of respondents indicated “extremely important Response Percent Response Count Extremely important 46.2% 30 Very important 27.7% 18 Moderately important 20.0% 13 Slightly important 1.5% 1 Not at all important 4.6% 3 Answer Options # of respondents who answered question 65 # of respondents who skipped question 0 2. The top three elements listed ranking first in order of importance for families were test results, doctor’s notes and medication lists. 45 40 % of Respondents . 2001, Canada has had a commitment to develop and implement electronic Since health records (EHRs) across the country, with the goal of having a more efficient and safer health care system (Canada Health Infoway (CHI). The focus to date has been largely on the development of such systems within individual organizations and the necessary linkages and networks that would allow for the sharing of health data among health professionals across a region and one day, the country. In the past, patients have only had access to their medical records by visiting medical records department of a hospital or health care institution. Over time, this has evolved to the point where there is now an opportunity for individuals to participate in their own health care to a greater degree and has facilitated access to an individual’s own health information as housed in existing electronic health record systems (eHR) and made it easier to share this information with other health care providers through an electronic personal health record (ePHR). This has allowed Canadians to manage their own health by providing electronic access to their health information and health care services (Consumer Health Solutions, n.d.). While such initiatives are in their infancy in Canada, there has been some progress in recent years. In Ontario, Sunnybrook hospital has developed its own ePHR record called MyChart. It offers self management tools that are entirely controlled by patients such as diaries to record health history, symptoms, and medications, emergency contact information as well as providing access to health education sites and appointment scheduling. Sunnybrook has also approached other health care facilities in Toronto, such as the Baycrest Centre for Geriatrics, in the hopes of developing the MyChart technology in other settings and sharing health information locally. Baycrest remains in the early stages of implementation and plans to test the ePHR concept in the spring of 2012 with pilot projects in three different clinical areas of outpatient services. If successful, it hopes to continue to expand the reach of the MyChart initiative into other areas of the organization such as the hospital and long term care facility. This study was developed in response to a specific request to participate in the pilot phase, by the Family council in the Apotex, a 472 bed long term care facility that houses residents with varying levels of cognitive impairment. In particular, the focus of this study was to examine the level of interest in a PHR in a long term care setting and identify the informational priorities and concerns of families related to MyChart so that Baycrest can better plan and implement the technology to meet the needs of families. Discussion Results 38.2 35 30 26.8 25 20 16.4 15 10 5 0 Methods Test Results % of Respondents Setting: The study took place at the Apotex of the Baycrest Centre for Geriatrics. The Apotex is a long term care facility comprised of 6 units, with 472 beds, and a 300- bed continuing care hospital. Design: A qualitative survey design was utilized to capture feedback from family members of residents being care for in the Apotex. Subjects: The study population was 188 family members for whom an email address was available. Family members of residents on all six units were represented. Instrument/Tool: A unique survey tool was designed and all data were collected using SurveyMonkey©. The survey was comprised of five questions: one Likert scale; the next was a rating question, followed by three open-ended questions. Procedure: A letter introducing the student was sent to all family council members one week prior to attending a family council meeting where the project and all details pertaining to the distribution of the planned electronic survey was explained. Generalized support for the study was obtained and it was recommended by family council members that the survey be distributed throughout all six units by the individual unit directors. Three weeks later, a link to the survey via was provided along with an introductory letter. Instructions were sent to the secretary of the Director of Care in the Apotex who then proceeded to forward it to all six unit directors. The survey was subsequently distributed to the 188 families. The study was closed 16 days later. Analysis: Descriptive statistics was used to examine the data collected. Any comments and/or suggestions provided by study participants in the survey and/or the focus group were analyzed for thematic content. Doctor's notes Top ranked PHR Elements Medication 3. When asked about the main reasons for wanting access to PHR records, families selected the three options as most important. The results of this study suggest that families indeed wish to receive more information to help them be effective partners in the care of their loved one. Respondents indicated that they believe access through a PHR would benefit them in that they would be to a greater extent, “in the loop” and better able to participate when discussing a family member’s care with the physician. Families indicated frustration with systems that make access to personal health information difficult. The vast majority of comments depicted difficulty in accessing information they felt they needed to participate in the care giving process. This requires Baycrest to explore how best to link MyChart to the organization’s eHR to allow patients and patient families being better informed. This will to enable them to make better decisions and feel a part of their loved ones’ care. Other findings were: 1) access to test results and doctor’s notes were the most desired; 2) Nurse’s notes were also highly rated and 3) Medication lists did not fall in to the top choices for families. Wanting nurse’s notes was a novel result and this may be due to the nature of the setting. In a long term care facility, the nurse’s role is much more significant where nurses spend more time with residents than any other caregiver. It is not unreasonable that families are interested in the nursing care plans when it comes to the health status of their loved ones.The families did not appear to view medication lists as one of the most important elements; as complications from drug interactions in individuals who often suffer from multiple chronic conditions is a large part of care in the elderly. The difficulty in rating all chart elements in order of priority may have lead to this result. So while accessing a medication list might have been important to study participants, the level of priority might have been more difficult to assign. Some families indicated that they would prefer to have full access to the eHR to allow for a comprehensive view of the health of their family member. The final question related to concerns about the use of a PHR to access personal health information. The vast majority of respondents did not express any major concerns. For those that did, privacy and confidentiality was the most common concern. It is possible that in this study, the assumption is being made that information will be protected according to national standards. Other concerns regarding the impact that a PHR might have on the personal relationships with onsite caregivers were raised because it is a long term care setting. In this instance, the PHR is being used by a family member who technically is monitoring a family member’s care. Unless they choose to be involved and initiate contact, there is not as great an obligation to meet with family members. In this case, some families might feel a PHR could potentially replace face to face contact to discuss issues or that care providers would assume family members are informed through the PHR rather than directly contact them or initiate a meeting. 80 70 66 Recommendations 68 60 1. 50 40 30 23 20 2. 3. 10 0 Communication with Healthcare Workers Awareness Reasons for Access Reassurance 4. Upon preparation for PHR in the Apotex, it is recommended that informationthat is accessible is both meaningful and useful to the family and patient. Comprehensive access should be given as opposed to one or two components of patient care. Prior to implementing MyChart, systems need to be in place to support health care providers feel less threatened by the introduction of this technology. Continuing to include and engage family members in the Apotex and other care settings as MyChart expands and develops at Baycrest will ensure the needs of families will be met.