{"id":20980,"date":"2018-10-05T16:40:16","date_gmt":"2018-10-05T20:40:16","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=20980"},"modified":"2018-10-05T16:40:16","modified_gmt":"2018-10-05T20:40:16","slug":"spm2018-speakers-_angelakennedy-and-daughter-grace-personal-health-information-is-saving-grace","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/10\/spm2018-speakers-_angelakennedy-and-daughter-grace-personal-health-information-is-saving-grace.html","title":{"rendered":"#SPM2018 speakers @_AngelaKennedy and daughter Grace: \u201cPersonal Health Information is Saving Grace\u201d"},"content":{"rendered":"

Here\u2019s the latest in our\u00a0series of posts by and about<\/a>\u00a0the outstanding speakers we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0<\/em>Register here<\/em><\/a>. (Our\u00a0#SPM2018 series<\/a>\u00a0has more about the speakers and activities.)<\/em><\/p>\n

Angela Kennedy, EdD, and her daughter Grace have been speaking on the topic of data access and use since Grace, now 16, was 11 years old. Grace, who is adopted, was mis-diagnosed with allergies but actually has cystic fibrosis.<\/p>\n

Many of the medical records for Angela\u2019s children (she has two adopted children) have been destroyed by both hospitals and clinics. As a result, she does not have a family medical history for them.<\/p>\n

Due to a lack of and incorrect personal health information, Grace was being treated for conditions she did not have. When something didn\u2019t add up, Grace was sent to a new specialist and was diagnosed with cystic fibrosis at the age of 11. The Kennedy family\u2019s lives changed forever.<\/p>\n

Grace is just one example of why the commitment to the consumer must be made so that we can provide health information where and when we need it, a guarantee that information will be available, accessible, accurate, and complete. \u201cI experienced many frustrations in my attempt to gather my child\u2019s medical records.\u201d says Angela. \u201cDue to an inaccurate entry in my daughter\u2019s medical record, the inheritable condition was overlooked.\u201d<\/p>\n

Both Angela and Grace, who are presenting at the upcoming Society for Participatory Medicine conference in Boston, are avid proponents of participatory medicine. In 2015, Angela testified at a hearing of the Senate Committee on Health, Education, Labor and Pensions. The committee session was titled, \u201cAmerica’s Health IT Transformation: Translating the Promise of Electronic Health Records Into Better Care.\u201d (Her testimony begins on page 28 of the transcript (PDF<\/a>).)<\/p>\n

To Angela, CEO of the Commission on Accreditation for Health Informatics and Information Management Education (CAHIIM),<\/a> and her daughter Grace, participatory medicine means that the patient and the provider determine and coordinate care together. The patient actively participates in the care that they receive. Patients are not passive in the caregiving process but actively in charge. Per Grace, \u201cThe patient is in the driver\u2019s seat and not a passenger along for the healthcare journey.\u201d<\/p>\n

At the SPM conference, Grace plans to discuss her intense experience including managing her own health records, clinical trial participation, how she leverages technology, and the many pitfalls of the healthcare system as she has experienced it.<\/p>\n

Grace drives these points home: \u201cConsumers need to be in charge of their care at every step in the wellness and care process. The use of patient generated healthcare data is important to both the consumer and the caregiver\u201d she says,\u00a0\u201cthe future of healthcare will be driven by the patient.\u201d<\/p>\n

\n

Join Us for #SPM2018 in Boston October 17<\/h3>\n

Learn more about SPM\u2019s\u00a0second annual conference<\/a>\u00a0on Oct. 17 in Boston or\u00a0register here today<\/strong><\/a>\u00a0($100 for members\/$150 for non-members). In our early years it\u2019s priced as a great bargain for a full day. And see this blog\u2019s\u00a0#SPM2018 series<\/a>\u00a0for more about the speakers and activities.<\/p>\n

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

Here\u2019s the latest in our\u00a0series of posts by and about\u00a0the outstanding speakers we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here. (Our\u00a0#SPM2018 series\u00a0has more about the speakers and activities.) Angela Kennedy, EdD, and her daughter Grace have been speaking on the […]<\/p>\n","protected":false},"author":4,"featured_media":20985,"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":[171,367,7344,5,8110,8116],"tags":[],"coauthors":[8123],"class_list":["post-20980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-e-patient-stories","category-medical-records","category-patient-conference-participation","category-ptdoc-co-care","category-spm-conferences","category-spm2018"],"jetpack_publicize_connections":[],"yoast_head":"\n#SPM2018 speakers @_AngelaKennedy and daughter Grace: \u201cPersonal Health Information is Saving Grace\u201d - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2018\/10\/spm2018-speakers-_angelakennedy-and-daughter-grace-personal-health-information-is-saving-grace.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"#SPM2018 speakers @_AngelaKennedy and daughter Grace: \u201cPersonal Health Information is Saving Grace\u201d - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Here\u2019s the latest in our\u00a0series of posts by and about\u00a0the outstanding speakers we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here. 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