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The Empowered Patient:Resources, Tools, Participation in Research
Craig H. LipsetBoard of Directors, Foundation for Sarcoidosis Research
Head of Clinical Innovation, Pfizer
Contents reflect the opinion of the presenter
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
ePatients are
educatedengagedelectronicequippedempowered
% of Americans >12 years who use Facebook
Edison Research 2011, Nielsen 2010 Media Fact Sheet and InsideFacebook.com 3/1/2010
The #3 site visited by users 65 and older
45-54 year olds: 13 million (↑ 400K/month)
55-65 year olds: 7.5 million (↑ 320K/month)
US adults seeking health information online[ePatients]
Pew Research Center’s Internet & American Life Project, August 9-September 13, 2010 Survey N=3001 adults.
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.
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.
Americans who say health-related research has helped them or someone close to them
Research!America, 2008
90% Purchased prescription drugs for themselves or their family
What Can You Do?
(1) Get Connected(2) Get Your Data(3) Get Involved
(1) Get Connected
11,914 members(25% visited in last month)
71% female / 29% male
Primarily US…but members from
75 countries
(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
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Patients are Ideal Aggregatorof Diverse Clinical Data
Patient may authorize and share electronic clinical data for research
(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)
Adult cancer patients participating in clinical trials
American Association for Cancer Research, 2008 Clinical Trial Awareness Campaign
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
Clinical trials delayed due to slow patient recruitment
Lamberti, "State of Clinical Trials Industry", 292; Adis R&D Insight
3,000+ New medicines in development
91% Willing to Share Data for Research
Clinical Trial Participation
Potential BenefitsFree 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 RisksSome 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.
COMING SOON: FSR SARCFSR Sarcoidosis Advanced Registry for Cures
FSR awarded participation in Global Rare Disease Registry ProgramSupported by NIH Office of Rare Disease Research
Sarcoidosis AdvancedRegistry for Cures
Registries are critical for:•Understanding disease natural history•Epidemiology•Advocacy•Helping patients participant in research
GRDR enables:•Efficiently launch registry on leading platform•Data sharing across disease areas•Use of consistent structured data
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 www.stopsarcoidosis.org and click research to learn more.
(3) Get Involved
Learn more at:
www.stopsarcoidosis.orgclick: Research
www.clinicaltrials.gov
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