The Empowered Patient: Resources, Tools, Participation in Research
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1 The Empowered Patient: Resources, Tools, Participation in Research Craig H. Lipset Board of Directors, Foundation for Sarcoidosis Research Head of Clinical Innovation, Pfizer Contents reflect the opinion of the presenter
2 Disclosure: I am an employee of Pfizer I volunteer on the Board of Directors for the Foundation for Sarcoidosis Research (FSR) This presentation reflects my opinions and not necessarily those of Pfizer or FSR
3 epatients are educated engaged electronic equipped empowered
4 % of Americans >12 years who use Facebook The #3 site visited by users 65 and older year olds: 13 million ( 400K/month) year olds: 7.5 million ( 320K/month) Edison Research 2011, Nielsen 2010 Media Fact Sheet and InsideFacebook.com 3/1/2010
5 US adults seeking health information online [epatients] Pew Research Center s Internet & American Life Project, August 9-September 13, 2010 Survey N=3001 adults.
6 US adults that have read a health-related blog or discussion forum Pew Research Center s Internet & American Life Project, August 9-September 13, 2010 Survey N=3001 adults.
7 US adults have tracked their weight, diet, exercise, or other health indicator online Pew Research Center s Internet & American Life Project, August 9-September 13, 2010 Survey N=3001 adults.
8 Americans who say health-related research has helped them or someone close to them 90% Purchased prescription drugs for themselves or their family Research!America, 2008
9 What Can You Do? (1) Get Connected (2) Get Your Data (3) Get Involved
10 (1) Get Connected 11,914 members (25% visited in last month) 71% female / 29% male Primarily US but members from 75 countries
11 (2) Get Your Data Medical records are legally owned by the healthcare provider who created the record But patients have a right to the information Meaningful Use (CMS/HER incentives) require patients have: (1) timely access (<4 days) (2) An electronic copy on request (3) A clinical summary of each visit
12 providers hospitals Patients are Ideal Aggregator of Diverse Clinical Data research labs pharmacies payers Patient may authorize and share electronic clinical data for research
13 (3) Get Involved Clinical Trials: Biomedical or Health-Related Research Studies May be Interventional or Observational Critical to Advancing Research (and may give access to new therapies)
14 Adult cancer patients participating in clinical trials 75% Would enroll in a trial if they knew one was available State they have little to no knowledge about clinical research and the participation process American Association for Cancer Research, 2008 Clinical Trial Awareness Campaign
15 Clinical trials delayed due to slow patient recruitment 3,000+ New medicines in development Lamberti, "State of Clinical Trials Industry", 292; Adis R&D Insight
16 91% Willing to Share Data for Research
17 Clinical Trial Participation Potential Benefits Free medical care & laboratory studies. Receive treatments before they are offered to others. You may or may not receive direct benefit for yourself and your condition as a result of participating in research, however, you will know that the knowledge learned by researchers may help others. Know the Risks Some risks are involved in clinical research, just as in routine medical care and activities of daily living. These may include unpleasant, serious or even life-threatening side effects to experimental treatment or the experimental treatment may not be effective. Risks associated with any research study should be described in detail in a written consent document and by a member of the research team.
18 COMING SOON: FSR SARC FSR Sarcoidosis Advanced Registry for Cures Registries are critical for: Understanding disease natural history Epidemiology Advocacy Helping patients participant in research Sarcoidosis Advanced Registry for Cures GRDR enables: Efficiently launch registry on leading platform Data sharing across disease areas Use of consistent structured data FSR awarded participation in Global Rare Disease Registry Program Supported by NIH Office of Rare Disease Research
19 Sample Donation: Organs, Tissue, Blood, DNA Call / submit a form at time of surgery (all logistics are arranged, no cost to patient). National Rare Disease Biospecimen Resource (NRDBR) makes samples available to researchers. Visit and click research to learn more.
20 (3) Get Involved Learn more at: click: Research
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