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