{"id":21425,"date":"2019-10-04T19:04:40","date_gmt":"2019-10-04T23:04:40","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21425"},"modified":"2019-10-04T19:04:40","modified_gmt":"2019-10-04T23:04:40","slug":"patient-generated-health-data-taking-the-lottery-out-of-love","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2019\/10\/patient-generated-health-data-taking-the-lottery-out-of-love.html","title":{"rendered":"Patient-Generated Health Data: Taking the Lottery Out of Love"},"content":{"rendered":"

(This post originally appeared Oct. 2, 2019 \u00a0on EngagingPatients.org)<\/p>\n

The dating site Match.com<\/a> wants to help singles \u201cfind the kind of relationship they\u2019re looking for\u201d by providing \u201cthe tools they need to help take the lottery out of love.\u201d<\/p>\n

The Centers for Medicare & Medicaid Services (CMS) would like to do the same for the relationship between patients and doctors through the \u201cbi-directional availability of data,\u201d as a notice in the Federal Register puts it.<\/p>\n

Admit it: you didn\u2019t know the feds were such fools for love.<\/p>\n

Although the doctor-patient relationship has undergone a great deal of change, at its core it\u2019s often remained as one-sided as traditional dating rituals where the balance of power is heavily weighted towards the man. In this case, it\u2019s an information asymmetry favoring the doctor that has only gradually lessened after years of cultural and legal pressure<\/a>.<\/p>\n

Think of \u201cbi-directional availability of data\u201d as Betty Friedan in bureaucratese. In The Feminine Mystique<\/em>, Friedan wrote<\/a> of women finding fulfillment outside of their traditional roles. On p. 888 of the fetchingly titled, \u201cProposed Rule, CMS-1715-P<\/a>\u201d \u2013 I\u2019ve greatly abbreviated the full title \u2013 CMS says this:<\/p>\n

We believe the bi-directional availability of data, meaning that both patients and their health care providers have real-time access to the patient\u2019s electronic health record (EHR), is critical. This includes patients being able to import their health data into their medical record and have it be available to health care providers.<\/em><\/p>\n

Translation: Forget the traditional roles. Both clinicians and patients should have real-time access to the medical record, and both clinicians and patients should be able to contribute information that\u2019s worth incorporating as part of the official medical record. \u201cEngagement,\u201d then, goes both ways.<\/p>\n

It\u2019s important to remember that what\u2019s being described here is aspirational, not actual. CMS issued a Request for Information, not a draft regulation. In a comment period that closed Sept. 27, the agency specifically sought ideas on how to \u201cencourage, enable and reward\u201d providers for the capture, exchange and use of patient-generated health data (PGHD).<\/p>\n

In comments to CMS, the Society for Participatory Medicine (SPM), on whose advocacy committee I serve, declared our belief that the importance of PGHD cannot be overestimated. We added:<\/p>\n

This data represents the voice of the patient, and it should be embraced. It should be collected during and between clinical encounters, and it should be represented in clinical documentation. At a minimum, PGHD offers contextual information to better personalize care, while also providing information to help health professionals maintain or improve care quality\u2026.<\/em><\/p>\n

Moreover, tracking health data provides patients with the capability to monitor and improve their health, understand their conditions, and productively function as full partners in their own care.<\/em><\/p>\n

Note that phrase, \u201cfull partners in their own care.\u201d That\u2019s the kind of relationship many patients and progressive providers are seeking, and that\u2019s the kind of relationship that PGHD has the potential to help enable.<\/p>\n

However, as with Internet dating sites, the potency of online tools can be overrated. PGHD is complicated. It may come from digital monitoring devices, but not all devices necessarily produce data of identical validity; e.g., your three-year old Fitbit versus a heart monitor from your doctor\u2019s office. Moreover, PGHD doesn\u2019t have to be digital at all. It could simply be your response over time to a series of questions, such as the degree to which you were able to walk pain-free after a hip replacement.<\/p>\n

Just as a romantic relationship can tank due to TMI (too much information), TMI can also torpedo a genuine doctor-patient partnership. Your doctor really doesn\u2019t need to know what each of several thousand patients in their panel had to eat every day. It\u2019s rarely individual data points, but trends, that hold the key. Avoiding TMI is why SPM believes that it\u2019s still too early to mandate that PGHD be incorporated into EHRs. Instead, we said, CMS<\/p>\n

should focus on identifying useful data, determining effective and convenient ways to capture, store it, and integrate it as appropriate with other relevant data and then display that information in a manner that conveys a useful, at-a-glance story to both patients and professionals.<\/em><\/p>\n

Tell a story. Not Cinderella rescued by the prince, but a story of partnership and participatory medicine.<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

(This post originally appeared Oct. 2, 2019 \u00a0on EngagingPatients.org) The dating site Match.com wants to help singles \u201cfind the kind of relationship they\u2019re looking for\u201d by providing \u201cthe tools they need to help take the lottery out of love.\u201d The Centers for Medicare & Medicaid Services (CMS) would like to do the same for the […]<\/p>\n","protected":false},"author":52,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[1],"tags":[],"coauthors":[8082],"class_list":["post-21425","post","type-post","status-publish","format-standard","hentry","category-general"],"jetpack_publicize_connections":[],"yoast_head":"\nPatient-Generated Health Data: Taking the Lottery Out of Love - 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