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relatively minor medicalcondition to more serious conditionfacing a challenging new development for apreviously diagnosed conditionexperiencing a troublesome side effect or other treatment complications
Patients 2.0 Introducing The Empowered Patient
April Meeting PATIENTS 2.0 INTRODUCING THEEMPOWERED PATIENTMARIE ENNIS O’CONNOR
e-Patients represent the newWikipedia breed of informed healthDefinition consumers, using the Internet to gather information about a medical condition of particular interest to them. Encompasses both those who seek online guidance for their own ailments and the friends and family members who go online on their behalf.
Tom Ferguson MD: “theGeorge Washington of patientempowerment”
E-Patient Dave Diagnosed with terminal kidney cancer Given 24-weeks to live.David de-Bronkart Joined online cancer patient community. Learned of a clinical trial for a powerful drug that only sometimes works. It worked! Today he leads the Society for Participatory Medicine.
It is not a failure on the doctor’spart. There is so much going onthese days. It is impossible forany one person to keep track ofevery new development. But anarmy of patients connectedthrough and fostered by theinternet, may do a better jobcollectively. Smart patients canfind things that doctors haven’tseen.
KatherineLeonPatient Advocate forWomen with HeartDisease, esp.Spontaneous CoronaryArtery Dissection(SCAD)Rare diseasePatient initiatedresearch Mayo Clinic
Information era converging with the digital era A new model of medicine is being induced by the digital era and the altered way in which information will be flowing.
New healthcare paradigm cannot be adequatelyunderstood in termsof our older medicalconstructs, including many still taught inmedical school and in continuing medical education.
The Internet is a place, anenvironment, made up of people and their myriad interactions. It is notmerely a technology but a new way ofcooperating, sharing, and caring Vinton Cerf, Americancomputer scientist, who is recognized as one of "the fathers of the Internet."
Pew Research Center’s Internet & American Life Project
Pew Research Center’s Internet & American Life Project
Women are more Men are more likely to search for likely to searchspecific diseases and for other medical informationproblems, reflecting relating totheir traditional role sexual health, as family health drugs, alcohol, caregivers. and smoking.
How do e-patients usethe internet? The ThePew Internet Study The Well Chronics Acutes
The Well Browse for general health and wellness May look upAbout 60 - 65 % of e- They are thepatients are well. information. pertinent lightest and medical least information frequent Often serve asThink about their online beforehealth only occasionally users of managers for or after aand sporadically. online health other family doctor’s visit resources. members’ health . concerns.
The Acutes Many use theAbout 5 - 6% of e- Internetpatients facing a new Reaching out Participate in every day. to onlinemedical concern orchallenge. professionals medical Searches and patients discussions online they have and support resources found online. communities. intensively.
The Chronics Use it to Most likely toAbout 30-35 % of e- manage their develop Webpatients have one or illnesses and to sites for their Moderately condition, tomore stable chronic heavy users help them keep up to date on post contentillnesses, but are not of online their to help others,currently dealing with a health conditions. and to respondpressing short-term to themedical challenge. resources. questions of Often active other patients. participants in online support communities
Satisfaction Doctor-patient e-mailRatings More information Ability to schedule about drug interactionsMost e-patients appear appointments onlineto be quite satisfiedwith most aspects oftheir experiences usingonline health resources.82% frequently found BUT - a significant percentage of e-the information they patients said that they would haveare looking for online. liked certain desired services or features they did not find online61 % said that onlineinformation improved Access to medical Online diagnostic toolsthe way they take care records and test resultsof themselves.
One e-patient in seven has made an appointment to see a doctor because of information or advice she found online.More StatsResponses from Pew One in seven has asked the doctor to prescribe aInternet study. specific medication he learned about online. Patients who have searched for medical information online are considerably more likely to consult doctors than are non-e-patients. Expertise increases with use - more skilled at searching online - more likely to post online content for other patients.
E-Patients’ Use Helps them feel:Of Internet“What I find online less dependenthelps me to feelprepared to talk with less fearful of the unknowndoctors and nurses. Iknow the terminology more capable of asking well-and the options.” informed questions more capable of evaluating options
Our first visit to the neurologist, whenmy son was diagnosed with autism,was not as devastating as it could havebeen. My husband and I were wellinformed and had already figured outthe diagnosis by the time we saw thedoctor. By being better informed, thatfirst visit was very informative andconstructive because we knew thebackground information, weren’t indenial, and could discuss therapiesand tests in a logical way.
Patients Like Me – a chronic disease socialnetwork with over 170,000users & over 1,000 diseases are using crowdsourcing –asking the public to help in their medical research . The data generated from users has resulted in a number of significant publications. is a social network ofpatients connected by their experiences with disease.
The patients who produce these sites dont know everything a physician might know, but they dont need to. They are smart, motivated, and experienced patients with an impressive and up-to-date knowledge of the best sources, centres, treatments,research, and specialists for their condition. Particularly knowledgeable on practical coping tips and the psychological and social aspects of living with a chronic condition .
We are learning that we are qualified through our experience, our knowledge, and our concern. We now see that we are capable ofcontributions no professionalcan make and that by linking our efforts [with those of professionals] in a coordinated team, we can advance the well being of all.Samantha Scolamiero,founder of theBRAINTMR mailing list
Amy Tenderich,Founder of Diabetes Mine We will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we wont use tools that add to the work of caring for ourselves.
Montefiore Medical Center in New York CityMontefiore started a clinic that would see patients 7 days after dischargeto go over medications, post-op activities and care and answer anyquestions that the patients had. Patients were given a wristband with Montefiore’s 24/7 Hotline number and told to call with any questions whatsoever. The wristband is a big hit with the patients.
60% of GP surgeries have the technology in place toallow patients online access to their records, yet at the moment less than 1% offers this.
Patients /"consumers" -- will beE-Patient enabled to take active ownershipWishlist of their health. Personal health data will be at“With free access tomedical the centre of our genome-information, patientslike me can drive our informed, personalised medicalown care for the first future.time in history” ~ AmyTenderich Web-based patient portals. Online consults/e-visits. International standards for mHealth.
But often the mostimportant revolutionsaren’t announced with the blare of trumpets.They occur quietly, too slowly to make the news, but fast enoughthat if you aren’t alert, the revolution is overbefore you’re aware it’s happening.
C0nnect With Me @JBBChttp://journeyingbeyondbreastcancer.com http://hcsmmonitor.com