Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems

BMC Psychiatry

Til Wykes¹  Diana Rose¹  Dave Newton²  Ninjeri Pandit²  Mike Denis²  Dan Robotham¹  Liam Ennis¹ 

[1] King’s College London, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK;South London and Maudsley NHS Foundation Trust, London, UK

关键词: Computer literacy;    Psychosis;    eHealth;    Patient empowerment;    Shared care;    ePHR;    Personal health record;   

Others  :  1092409
DOI  :  10.1186/s12888-014-0305-9

 received in 2014-04-11, accepted in 2014-10-18,  发布年份 2014

【 摘 要 】

Background

Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout.

Methods

There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team.

Results

Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR.

Conclusions

We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.

【 授权许可】

   
2014 Ennis et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1][http://www.bcs.org/upload/pdf/guidance-health-and-socal-records.pdf] webcite BCS The Chartered Institute for IT: Keeping your online health and social care records safe and secure. 2013. Downloaded from , 04.09.2014.
• [2][http://www.myhealth.london.nhs.uk/sites/default/files/u3246/ItsYourRecord.pdf] webcite London Connect: It's your record: a guide to accessing health records online. 2012. Downloaded from , 04.09.2014.
• [3][http://guides.nnlm.gov/content.php?pid=287967&sid=2954062] webcite National Network of Libraries of Medicine: Personal Health Records (PHR) and Patient Portals. accessed on 04.09.2014.
• [4]Blumenthal D: Stimulating the adoption of health information technology. New Engl J Med 2009, 360(15):1477-1479.
• [5]The Power of Information: Putting all of us in Control of the Health and Care Information we Need. HM Crown, London, UK; 2012.
• [6]Burns T, Catty J, White S, Clement S, Ellis G, Jones IR, Lissouba P, McLaren S, Rose D, Wykes T: Continuity of care in mental health: understanding and measuring a complex phenomenon. Psychol Med 2009, 39(2):313-323.
• [7]Jones DA, Shipman JP, Plaut DA, Selden CR: Characteristics of personal health records: findings of the Medical Library Association/National Library of Medicine Joint Electronic Personal Health Record Task Force. J Med Libr Assoc 2010, 98(3):243-249.
• [8]Hillestad R, Bigelow J, Bower A, Girosi F, Meili R, Scoville R, Taylor R: Can electronic medical record systems transform health care? Potential health benefits, savings, and costs. Health Affair 2005, 24(5):1103-1117.
• [9]Ueckert F, Goerz M, Ataian M, Tessmann S, Prokosch HU: Empowerment of patients and communication with health care professionals through an electronic health record. Int J Med Inform 2003, 70(2–3):99-108.
• [10]Stewart R, Soremekun M, Perera G, Broadbent M, Callard F, Denis M, Hotopf M, Thornicroft G, Lovestone S: The South London and Maudsley NHS foundation trust biomedical research centre (SLAM BRC) case register: development and descriptive data. BMC Psychiatry 2009, 9(1):51.
• [11]Pagliari C, Detmer D, Singleton P: Potential of electronic personal health records. BMJ 2007, 335(7615):330-333.
• [12]Ennis L, Rose D, Callard F, Denis M, Wykes T: Rapid progress or lengthy process? Electronic personal health records in mental health. BMC Psychiatry 2011, 11(1):117.
• [13]Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B: Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet 2012, 380(9836):37-43.
• [14]Ben-Zeev D, Brenner CJ, Begale M, Duffecy J, Mohr DC, Mueser KT: Feasibility, acceptability, and preliminary efficacy of a smartphone intervention for schizophrenia.Schizophr Bull 2014. doi:10.1093/schbul/sbu033.
• [15]Ben-Zeev D, Kaiser SM, Brenner CJ, Begale M, Duffecy J, Mohr DC: Development and usability testing of FOCUS: a smartphone system for self-management of schizophrenia. Psych Rehabil J 2013, 36(4):289.
• [16]Leonard KJ: The role of patients in designing health information systems: the case of applying simulation techniques to design an electronic patient record (EPR) interface. Health Care Manage Sci 2004, 7(4):275-284.
• [17]Kessler RC, Foster CL, Saunders WB, Stang PE: Social consequences of psychiatric disorders, I: Educational attainment. Am J Psychiatr 1995, 152(7):1026-1032.
• [18]Ennis L, Rose D, Denis M, Pandit N, Wykes T: Can't surf, won't surf: the digital divide in mental health. J Ment Health 2012, 21(4):395-403.
• [19][http://ico.org.uk/for_organisations/data_protection] webcite Information Commissioner’s Office: Data protection. accessed on 04.09.2014.
• [20]Crawford MJ, Robotham D, Thana L, Patterson S, Weaver T, Barber R, Wykes T, Rose D: Selecting outcome measures in mental health: the views of service users. J Ment Health 2011, 20(4):336-346.
• [21]Spitzer RL, Kroenke K, Williams JB, Löwe B: A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 2006, 166(10):1092-1097.
• [22]Kroenke K, Spitzer RL, Williams JB: The Phq‐9. J Gen Intern Med 2001, 16(9):606-613.
• [23]Druss BG, Ji X, Glick G, Silke A: Randomized trial of an electronic personal health record for patients with serious mental illnesses. Am J Psychiatr 2014, 171(3):360-368.
• [24]Wynia M, Dunn K: Dreams and nightmares: practical and ethical issues for patients and physicians using personal health records. J Law Med Ethics 2010, 38(1):64-73.
• [25]Arguello J, Butler BS, Joyce E, Kraut R, Ling KS, Rosé C, Wang X: Talk to me: foundations for successful individual-group interactions in online communities. In Proceedings of the SIGCHI conference on Human Factors in computing systems. ACM, New York, NY, USA; 2006:959-968.
• [26][http://www.bigwhitewall.com/] webcite Big White Wall: Big White Wall. accessed on 04.09.2014.
• [27]Drake G, Csipke E, Wykes T: Assessing your mood online: acceptability and use of Moodscope. Psychol Med 2013, 43(7):1455-1464.
• [28]Silvestre A-L, Sue VM, Allen JY: If you build it, will they come? The Kaiser Permanente model of online health care. Health Aff 2009, 28(2):334-344.
• [29][http://www.bbc.co.uk/news/health-26239532] webcite Triggle N: Giant NHS database rollout delayed. In BBC News. BBC News Health: BBC News; 2014 (online article; ).
• [30]Dinos S, Stevens S, Serfaty M, Weich S, King M: Stigma: the feelings and experiences of 46 people with mental illness Qualitative study. Br J Psychiatry 2004, 184(2):176-181.
• [31]O'Carroll R: Cognitive impairment in schizophrenia. Adv Psychiatr Treat 2000, 6(3):161-168.
• [32]Liu C, White RW, Dumais S: Understanding web browsing behaviors through Weibull analysis of dwell time. In Proceedings of the 33rd International ACM SIGIR Conference on Research and Development in Information Retrieval. ACM, Geneva, Switzerland; 2010:379-386.
• [33]Pagliari C, Detmer D, Singleton P: Electronic Personal Health Records. Emergence and Implications for the UK London, The Nuffield Trust; 2007.
• [34]Chau PYK, Lai VSK: An empirical investigation of the determinants of user acceptance of Internet banking. J Org Comp Elect Com 2003, 13(2):123-145.
• [35]Cresswell K, Sheikh A: The NHS Care Record Service (NHS CRS): recommendations from the literature on successful implementation and adoption. Inform Primary Care 2009, 17(3):153-160.
• [36]Kirshbaum MN: Are we ready for the electronic patient record? Attitudes and perceptions of staff from two NHS trust hospitals. Health Inform J 2004, 10(4):265-276.
• [37]Ward R, Stevens C, Brentnall P, Briddon J: The attitudes of health care staff to information technology: a comprehensive review of the research literature. Health Inform Lib J 2008, 25(2):81-97.