Pagliari, Claudia

English

Commentary triggered by the rollback of the requirement for US health organisations to demonstrate patient engagement with electronic health records as a condition for HITICH incentive payments. Reflects on the 'uncomfortable truth' of low uptake of Personal Health Records (PHR) and calls for new research to better understand which where and for which patients the benefits are most likely to be felt. Emphasises the importance of continuing to make these systems available in order to enable citizens to exercise their digital rights, even if many of us choose not to use them. Also considers the potential for emerging personal digital health tools to augment PHR and to provide better insights about their use and effectiveness

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     Edinburgh Research Explorer                                      Value of Personal Health Records for Patients, Citizens &ScienceCitation for published version:Pagliari, C 2015, Value of Personal Health Records for Patients, Citizens & Science. LinkedIn Publishing.<https://www.linkedin.com/pulse/thinking-holistically-value-personal-health-records-claudia-pagliari>Link:Link to publication record in Edinburgh Research ExplorerGeneral rightsCopyright for the publications made accessible via the Edinburgh Research Explorer is retained by the author(s)and / or other copyright owners and it is a condition of accessing these publications that users recognise andabide by the legal requirements associated with these rights.Take down policyThe University of Edinburgh has made every reasonable effort to ensure that Edinburgh Research Explorercontent complies with UK legislation. If you believe that the public display of this file breaches copyright pleasecontact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately andinvestigate your claim.Download date: 22. Nov. 2020Image from InformationWeek websiteValue of Personal Health Records forPatients, Citizens & SciencePublished on April 19, 2015Last week saw strong reactions to a proposed rollback of the requirement for US healthorganizations to demonstrate patient engagement with electronic health records as acondition for HITECH incentive payments. Much of this stemmed from an impassionedspeech at the HIMSS conference by the former US National Coordinator for Health IT,Farzad Mostashari, who’d spent much of his time in office trying to facilitate this. (1) The original expectation of at least 5% of patients using a personal health record orportal to access their data, has been watered down to only one patient, merely toindicate that the technology is in place. The patient empowerment and e-patientcommunities have interpreted this as a major slap in the face, with passions runninghigh online and a furry of activity on social media. (2)Although lack of access to such technologies is the number one barrier to patient recordaccess on both sides of the Atlantic, there are now some well-embedded examples,particularly in major US health organisations but also in UK primary care andelsewhere, and modest evidence is beginning to accumulate of benefits to some patientsand providers. (3) Unfortunately what has also become apparent is that relatively fewpatients actually make use of these tools even when they are available to them. Forthose of us dedicated to improving patient health through technology, responding to thisuncomfortable truth is a challenge but one that we must deal with. Patients who are notill, managing a long-term condition, undergoing a procedure or filling in insuranceforms have little incentive to look at their medical record. That describes most of us,most of the time. This can disguise the benefits for specific groups when evaluatingrecord access across general patient populations and further research is needed tounderstand the types of users most likely to benefit and the components of complexEdit articleClaudia PagliariProgramme Director, MSc in Global eHealth at The Uni…12 7 0systems that are most likely to help. (4) The rise of personal data platforms like Apple’sHealthKit may shed new light on some of these nuances, but here we’re mainly talkingabout the records held by healthcare providers.Despite these inconveniences, it is indisputable that as a society, and as healthprofessionals, we need to do much more to empower people to engage in preventive andwellness behaviours, and motivating patients to use their health record for information,self-tracking, or as an to aid shared decision-making is an important part of this. This iseasier said than done, considering that conditions like Type 2 diabetes often arise, atleast in part, through a lack of health motivation in the first place – something that canbe overlooked in eloquent narratives by enthusiasts like e-Patient Dave. Key challengeslie in raising awareness, making systems usable and genuinely useful for patients,overcoming professional and patient resistance to the idea that personal data will besomehow ‘let loose’, with risks to privacy, and convincing purchasers that it’s worth themoney to invest in implementing and maintaining these services.I strongly disagree with the argument that because record access technologiesaren't going to be actively used by the majority they should be relegated down thepriority list for health systems.  What's critical here is ensuring that, as citizens, we havethe means by which to exercise our rights to see and, if appropriate, interact with ourhealth information should we wish or need to. Whether or not this right is acted upon,it's an equally valid reason for making such systems more widely available. With citizendigital empowerment and data rights high on the European policy agenda (not just forhealth) it’s likely that this will drive political decision making on this side of the pondjust as much as the health improvement agenda, and many governments are currentlywrestling with how to deliver these ‘ICT-enabled benefits for society’. (5)There are other, less obvious but equally important, reasons for investing in thesepatient-centric technologies, which have implications for science and policy. Highlypublicised data breaches, the Snowden revelations and concerns about misuse ofpersonal information in many countries – typified by the furore over care.data in theUnited Kingdom (6) – have triggered the suspicion which is driving many people toactively opt out of sharing their data for bone fide research purposes. This presents risksfor understanding health trends and inequalities, evaluating the impacts of newinterventions and progressing innovations in personalized medicine. Policymakers needto be aware that the Return on Investment in personal health record systems will comenot just from the theorized clinical and financial benefits of record access but,significantly, through the trust that comes with being open with patients about the datathat is held about them.  In light of these various risks, the apparent de-prioritisation of patient engagementsignaled by the changed US requirements is of concern, although it may simply reflectthe inevitable reality of trying to get complex systems in place within over-optimistictimescales. Hopefully a statement of long-term intent will help to dispel this impression,but other countries should take note of the reaction.Key words: Electronic Health Record. Personal Health Record. Personalised Medicine.Data rights. Privacy. Patient empowerment. Research. Public attitudes. References1. Mostashari wants ‘day of action’ for widespread patient access to records. By NeilVersel. MedCity News. April 12th. http://medcitynews.com/2015/04/mostashari-wants-day-action-widespread-patient-access-records/#.VSrowD52F3g.facebook2. Commentary on 1. by e-Patient Dave | April 13, 2015 http://e-patients.net/archives/2015/04/proposed-rule-change-will-reverse-data-sharing-requirements-regina-farzad-call-for-national-day-of-action-to-fight-back.html3. The Effect of Patient Portals on Quality Outcomes and Its Implications toMeaningful Use: A Systematic Review. Kruse et al 2015. Journal of MedicalInternet Research Vol 17, No 2 (2015) http://www.jmir.org/2015/2/e44/4. Pinciroli F, Pagliari C. Understanding the Evolving Role of the Personal HealthRecord. Computers in Biology and Medicine 59 (2015) 160–163https://www.researchgate.net/publication/272792644_Understanding_the_Evolving_Role_of_the_Personal_Health_Record5. Digital Agenda for Europe. (Pillar 7 ICT Enabled Benefits for Society.)https://ec.europa.eu/digital-agenda/en/progress-pillar Updated 26.2.156. We now trust no one with our data – not even our doctors. Jonathan Freedlandwriting in The Guardian newspaper, January 2014http://www.theguardian.com/commentisfree/2014/jan/31/nhs-medical-data-trust-doctors-edward-snowden Tagged in: personalized medicine, healthcare information technology, citizen engagementClaudia PagliariProgramme Director, MSc in Global eHealth at The University of Edinburgh9 articlesLeave your thoughts here…Dr. E Beratarbide (My views only)IG Advisor at The Scottish Government (eHealth) - IG Lead for NHS - Health Informatics Tutor…Interesting ideas, Claudia, and no less shocking results… 1 patient only ? not even the expected 5%?shocking !I suppose we have to accept the reality and learn from it. I agree with all the reason presented here, specially regarding lack of trust in appropriate data protec-tion, as IG Lead I only can sympathise with this concerns, and will get worse before gets better b… See more1yNewest7 commentsHelp Center About Careers Advertising Talent Solutions Sales Solutions Small Business Mobile Upgrade Your AccountLinkedIn Corporation © 2017 User Agreement Privacy Policy Ad Choices Community Guidelines Cookie Policy Copyright Policy Send FeedbackFun and Fallacy in Consumer GeneticsMarketingClaudia Pagliari on LinkedInPoliticians and the Privacy-TransparencyParadoxClaudia Pagliari on LinkedInTechnology, politics and power - Russiaplans new mobile OSClaudia Pagliari on LinkedInLooking for more of the latest headlines on LinkedIn?Don't miss more articles by Claudia PagliariLike Reply1Claudia PagliariProgramme Director, MSc in Global eHealth at The University of EdinburghThanks Nuno. You’re right about the need to see the whole person, to think about how people fit thesesorts of technologies into their lives, and to co-design systems with users and providers of services,which are good principles for all of digital health. The PHR space is complicated by the need to sepa-rate but also to somehow bridge provider-owned and patient-owned data… See more1yLike ReplyThere are 5 other comments. Show more.Discover more storiesLanguage

Value of Personal Health Records for Patients, Citizens &amp; Science

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Value of Personal Health Records for Patients, Citizens & Science

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Value of Personal Health Records for Patients, Citizens & Science