Myth of Average: Why Individual Patient Differences Matter

Mom always told you that you were a unique and special person, right?  But, can being unique put you at risk for not getting the medical care that’s best for you? On November 30, health care stakeholders came together to break down the "myth" of the average patient and explored how health policy decisions can impact patient care.

Overview

NPC President Dan Leonard kicked off the conference by thanking sponsors National Health Council and WellPoint, along with 17 cosponsors representing diverse health care organizations.    

Leonard also outlined the main goals of the conference, which included:

  • Understanding how biology, genetics, demographics and/or individual preferences may lead to clinically important differences among patients.

  • Exploring the extent to which these variations exist and should be considered in developing treatment decisions, practice guidelines, and/or coverage and reimbursement policies.

  • Understanding the benefits and limitations of subgroup analyses to predict which treatments are best for individual patients.

  • Assessing how failure to individualize care may contribute to poor clinical outcomes and health disparities.

  • Considering how to engage, educate and train your constituents in support of individualized patient care.

Expand for Agenda

Agenda

To view speaker presentations (PDF format), please click on the speaker's name. Presentations are not available for all speakers.

7:30 a.m. Registration Open and Continental Breakfast
 
8:00 a.m. Welcome and Introduction

  • Dan Leonard, MA, President, National Pharmaceutical Council
  • Marcus Wilson, PharmD, President, Healthcore, Inc.

8:15 a.m. Patient Perspective

8:45 a.m. Keynote Presentation on Patient Centeredness

  • Joe V. Selby, MD, MPH, Executive Director, Patient-Centered Outcomes Research Institute (PCORI)

9:30 a.m. Framing Presentation

10:00 a.m. One of These Folks Is Not Like the Other: Variability Among Patients and Study Findings
(Moderator: Myrl Weinberg, FASAE, CAE, President, National Health Council)

  • Getting It Right the First Time: Can We Predict Who is Likely to Respond?
    • David M. Kent, MD, MSc, Associate Professor of Medicine, Neurology, Clinical and Translational Science (CTS), Tufts Medical Center; Director of the CTS MS/PhD Program, Sackler School of Graduate Biomedical Sciences, Tufts University
  • Patient Differences: Biological and Non-Biological Factors?
    • C. Daniel Mullins, PhD, Professor, Pharmacoeconomics, Pharmaceutical Health Services Research Department; Associate Director, Center on Drugs and Public Policy; University of Maryland School of Pharmacy
  • Heterogeneity and Health Disparities: How Patient Preferences Impact Outcomes
    • David Meltzer, MD, PhD, Associate Professor of Medicine and Economics, and Public Policy; Director, Center for Health and the Social Sciences, University of Chicago

11:30 a.m. Luncheon With Keynote Presentation

  • Patrick H. Conway, MD, MSc, Chief Medical Officer, Centers for Medicare and Medicaid Services; Director, Office of Clinical Standards and Quality

1:00 p.m. Deciphering Heterogeneity for Health Care Decision Making
(Moderator: Marcus Wilson, PharmD, President, Healthcore, Inc.)

  • Jennifer S. Graff, PharmD, Director for Comparative Effectiveness Research, National Pharmaceutical Council
  • Daniel C. Malone, RPh, PhD, Professor of Pharmacy and Director of Pharmaceutical Policy, Center for Health Outcomes and PharmacoEconomic Research, University of Arizona College of Pharmacy
  • Paul Martino, Senior Vice President of Clinical Strategy and Innovation, WellPoint, Inc.
  • Lewis (Lew) G. Sandy, MD, Senior Vice President, Clinical Advancement, UnitedHealth Group

2:30 p.m. Break
 
2:45 p.m. Issues and Opportunities on the Journey to Individualized Care
(Moderator: Robert (Bobby) W. Dubois, MD, PhD, Chief Science Officer, National Pharmaceutical Council)

  • Sharon Allison-Ottey, MD, Executive Director and Director of Health and Community Initiatives, The COSHAR Foundation
  • C. Daniel Mullins, PhD, University of Maryland School of Pharmacy
  • Ellen V. Sigal, PhD, Founder and Chairperson, Friends of Cancer Research
  • Myrl Weinberg, FASAE, CAE, President, National Health Council

3:30 p.m. Summary and Adjournment

  • Dan Leonard, MA, President, National Pharmaceutical Council 

Sessions

Patient Perspective

National Health Council President Myrl Weinberg, FASAE, CAE, outlined the importance of recognizing individual treatment effects when choosing among health care treatments. She explained that part of the challenge is that many patients do not understand what comparative effectiveness research is, which can make it difficult to engage patients in the development of research. Patients and caregivers who do learn about CER have concerns that findings could be used to block access to treatment options. Developing usability criteria to guide the research process will help ensure findings serve patients - the true focus of the health care system, Weinberg said.

Video

Patients, Research and Access to Health Care

Myrl Weinberg, FASAE, CAE, president of the National Health Council, says that it's important to for individuals, especially those with chronic conditions, to have access to the right health care, which will result in better health outcomes. She also encourages patients to get involved early on in the research process.

Ms. Weinberg spoke at "The Myth of Average: Why Individual Patient Differences Matter," a conference focusing on issues related to individual treatment effects.

Tweets

 Next up: Myrl Weinberg of @NHCouncil to discuss importance of individual #patient differences in choosing #healthcare treatments #myth2012

  Weinberg of @NHCouncil: Focus grp research shows patients don't know what CER is, believe it might be barrier to care options. #myth2012

  Weinberg of @NHCouncil: 4-step #patient engagement process starts with drafting #CER questions #myth2012

 Weinberg of @NHCouncil: Next step is identifying #CER issues #patients care about #myth2012 #healthcare

RT @npcnow: Weinberg of @NHCouncil: 4-step #patient engagement process starts with drafting #CER questions #myth2012
@ericalfischer

 Weinberg of @NHCouncil: Patient prefs and concerns need to incorporated into #CER convo. #myth2012@npcnow

#PCORI welcomes your #CER questions pcori.org/questions #myth2012
@PCORI

 Weinberg of @NHCouncil: Third step is evaluating #CER findings to see if they can support decision making #myth2012 @npcnow

 RT @npcnow: Weinberg of @NHCouncil: Patient prefs and concerns need to incorporated into #CER convo. #myth2012 @InspiredHealth

 Weinberg of @NHCouncil: Last step is helping #patients & caregivers understand #CER results - ID what's most useful #myth2012 @npcnow

 “@npcnow: Weinberg of @NHCouncil: Patient prefs and concerns need to incorporated into #CER convo. #myth2012@MiriamETucker

 Weinberg of @NHCouncil: Transparency & inclusivity key for #patient engagements #myth2012 #CER @npcnow

 Engaging pt advocacy orgs only at dissemination is too late! Pt orgs and pts must be engaged in #CER throughout the process. #myth2012 @Busted_Pancreas

RT @Busted_Pancreas: Engaging pt orgs at dissemination is too late! Pt orgs and pts must be engaged in #CER throughout the process #myth2012 @InspiredHealth

Presentation Materials

Keynote Presentation on Patient Centeredness

Dr. Joe Selby, executive director of the Patient-Centered Outcomes Research Institute (PCORI), said that the law creating his agency requires research to take individual treatment effects into account. Specifically, "research shall be designed, as appropriate the potential for differences in the effectiveness of health care treatments, services, and items as used with various subpopulations..."

Video

A Conversation With PCORI's Executive Director Dr. Selby

National Pharmaceutical Council President Dan Leonard recently sat down with Dr. Joe Selby, executive director of the Patient-Centered Outcomes Research Institute to talk about some of the agency's recent activities. In this wide-ranging conversation, Dr. Selby details recent efforts to engage patients in crafting research questions, the agency's accomplishments in 2012, and takes a look at what to expect during the next year.

Tweets

 Next up: @PCORI Executive Director Dr Joe Selby to discuss the role of #patient-centered research. #myth2012 #CER #EBM

RT @npcnow: Great crowd at #myth2012! @NPCNow President Dan Leonard & Marcus Wilson of @ThinkWellPoint are kicking off the conversation

 #PCORI’s Selby: Long list of factors affect how treatments work in different pts. Challenging to incorp factors into research. #myth2012 

Thank you! RT @npcnow: TY to #myth2012 cosponsors @HealthHIV @MensHlthNetwork NAHH @NAMI NASPA @NationalGrange @NMQF @pfcd @newsfromPMC

 #PCORI’s Selby: PCORI application guidelines ask researchers to consider analysis of heterogeneity #myth2012

 Tweeting from @npcnow The Myth of Average: Why Individual Patient Differences Matter, finally some attention to personalized meds #myth2012   

 RT @npcnow: #PCORI’s Selby: PCORI application guidelines ask researchers to consider analysis of heterogeneity #myth2012 

 ACA legislation establishing @pcori includes charge to consider patient variation in research. -PCORI president Joe V. Selby, MD #myth2012 

 RT @npcnow: Weinberg of @NHCouncil: Transparency & inclusivity key for #patient engagements #myth2012 #CER

 RT @npcnow: Weinberg of @NHCouncil: Transparency & inclusivity key for #patient engagements #myth2012 #CER

 RT @PCORI: #PCORI welcomes your #CER questions pcori.org/questions #myth2012

 RT @npcnow: Great crowd at #myth2012! @NPCNow President Dan Leonard & Marcus Wilson of @ThinkWellPoint are kicking off the conversation

 #PCORI’s Selby: Many examples of varying treatment impact in pts for specific diseases #cancer #depression #diabetes #myth2012

 RT @PCORI: #PCORI welcomes your #CER questions pcori.org/questions #myth2012

 RT @npcnow: TY to #myth2012 cosponsors @Aging_Research @AACPharmacy @AARDATweets @AOAforDOs @IAmBiotech @Easter_Seals @CancerResrch @HealthInFocus

 RT @npcnow: TY to #myth2012 cosponsors @HealthHIV @MensHlthNetwork NAHH @NAMI NASPA @NationalGrange @NMQF @pfcd @newsfromPMC

 Joe Selby - PCORI methodology standards include requirement that study pops represent spectrum of pt population. #myth2012

 #PCORI’s Selby: When research doesn't answer every Q, must answer how we integrate patient prefs #myth2012

 #PCORI’s Selby: When research doesn't answer every Q, must answer how we integrate patient prefs #myth2012

 #PCORI's Joe Selby: Patient engagement is important & need to be involved from the beginning #myth2012

 RT @Busted_Pancreas: Joe Selby-PCORI methodology standards include requirement that study pops represent spectrum of pt population #myth2012

 Why slow progress? RT @AKhosla12:#PCORI's Joe Selby: Patient engagement is important & need to be involved from the beginning #myth2012

 Q&A: Spkr from Natl Genome Ctr at HowardU at the mic: Variation @ heart of the genome, opp to use large data sets to understand #myth2012

 @AKhosla12 Following you at #myth2012. Are they saying why including pt from beginning is so slow to adopt?

 "As you increase the number of subgroups you analyze, you zero in on the individual." -@pcori president Joe V. Selby, MD #myth2012 

 HLC is pleased to cosponsor today's @npcnow forum on health policy and individual patient differences #myth2012

Presentation Materials

Framing Presentation

NPC Chief Science Officer Dr. Robert Dubois debunks the myth of the "average" patient and explains the concept of heterogeneity, or individual treatment effects, and why researchers need to take it into account when conducting studies. Dr. Dubois says that researchers must consider the potential causes of heterogeneity; payers must consider how to handle it when making coverage decisions; and patients must consider how they can utilize these studies in making treatment decisions.

Tweets

Next up: @npcnow Chief Science Officer Robert Dubois examines how #patient differences impact comparative effectiveness research #myth2012 

Dubois of @npcnow: .@PCORI $500M a year investment in comparative effectiveness research will yield new data #myth2012
NPC@npcnow 

Dubois of @npcnow: #CER more complex than Treatment A vs Treatment B. "Avg pt" not equal to "individual pt" #myth2012 #CER
NPC@npcnow 

RT @npcnow: Dubois of @npcnow: #CER more complex than Treatment A vs Treatment B. "Avg pt" not equal to "individual pt" #myth2012 #CER 

Dubois of @npcnow: One concern was that state health insurance exchanges could limit #patient drug access to 1 per class #myth2012 

Dubois of @npcnow: Early adopter states plan to cover range of meds through #health insurance exchanges #myth2012 

RT @npcnow: Dubois of @npcnow: Early adopter states plan to cover range of meds through #health insurance exchanges #myth2012 

RT @HealthInFocus: HLC is pleased to cosponsor today's @npcnow forum on health policy and individual patient differences #myth2012 

Dubois of @npcnow: Ignoring differences & treating everyone the same can harm #patients #myth2012 #CER
NPC@npcnow 

MT @npcnow: Dubois of NPC - One concern was that state health insurance exchanges could limit #patient drug access to 1 per class #myth2012
Anchal@AKhosla12 

Robert Dubois, NPC - averages (in medical treatment) are important, but there are people who differ from the average. #myth2012@Busted_Pancreas 

RT @npcnow: TY to #myth2012 cosponsors @Aging_Research @AACPharmacy @AARDATweets @AOAforDOs @IAmBiotech @Easter_Seals @CancerResrch @IAmBiotech 

@MiriamETucker - another DOCer in the house? #smallworld #myth2012 #DOC
@Busted_Pancreas 

Dubois of @npcnow: “No significant diff” research conclusions often leave out “but indiv results vary” #patients #myth2012 #CER
NPC@npcnow 

Dubois: Cost of being wrong? Some condtns mean 1 chance to get it right Should higher risk = more freedom to tailor care? #myth2012
NPC@npcnow 

Dubois of @npcnow: Age, disease severity & environment among factors that can cause meds to work for 1 #patient & not another #myth2012
NPC@npcnow 

Dubois of NPC: "#patient preferences make a difference too & can change which treatment will be more effective" very true! #myth2012
Anchal@AKhosla12 

Q: what about times when we don’t even know what the appropriate tx is for the average patient? #myth2012
@Busted_Pancreas 

Great collective thinking about treating the individual patient #myth2012
Tom Workman@drworkman 

Bobby Dubois - Evidence for paleo diet? Zippo! What was the lifespan of your average caveman? #mademesmile #myth2012 #notacure
@Busted_Pancreas 

RT @npcnow: TY to #myth2012 cosponsors @Aging_Research @AACPharmacy @AARDATweets @AOAforDOs @IAmBiotech @Easter_Seals @CancerResrch @HealthInFocus
@CancerResrch 

Dubois: meta analysis is not a license to generalize! #myth2012
@Busted_Pancreas 

Judging by crowd laughs, a few of you are using Paleo diet! Dubois: thin evidence, lifespan of cavemen illustrative? #myth2012
NPC@npcnow

Presentation Materials

One of These Folks Is Not Like the Other: Variability Among Patients and Study Findings

Even when researchers pour over large numbers of studies, it can be difficult to parse out which subgroups will experience different treatment responses. A panel of researchers explored some of the challenges, including the variable quality of past studies, the variety of environmental and biological factors involved, the need for large numbers of research subjects, and the role of self selection in outcomes.

Video

Factors Affecting Patient Responses to Therapies

Dr. C. Daniel Mullins, Professor, University of Maryland School of Pharmacy, explains some of the biologic and non-biologic factors that can affect patient responses to therapies, as well as how to determine which of those factors might be the main cause. He also discusses potential policy implications when considering how to address individual treatment effects.

Individual Treatment Effects and Randomized Controlled Trials

David M. Kent, MD, MSc, associate professor of Medicine, Neurology, and Clinical and Translational Science at Tufts Medical Center, describes the limitations of randomized control trials in identifying individual treatment effects.  To offset these limitations, he recommends researchers routinely risk stratify their trial populations since risk modeling is a fundamental determinant of the opportunity for treatment benefit.

Tweets

Next up: Panel discussion on #patient differences and study findings #myth2012 #CER
NPC@npcnow 

Moderated by Myrl Weinberg of @NHCouncil #myth2012
NPC@npcnow 

Next up: David Kent of @TuftsMedicalCtr analyzes predictive technology for identifying #patient differences #myth2012 #CER
NPC@npcnow 

Kent @TuftsMedicalCtr: Provocative Q-50ppl parachute 25 chutes open/25 don’t Is that heterogeneity? Mixed reax = varying defs #myth2012
NPC@npcnow 

Kent of @TuftsMedicalCtr: Risk prediction of outcomes & harms should guide heterogeneity #myth2012
NPC@npcnow 

Kent of @TuftsMedicalCtr: GUSTO trial showed drug w/ strong results wasn’t best for many heart attack #patients #myth2012
NPC@npcnow 

Kent of @TuftsMedicalCtr: Subgroups should only guide clinical practice when there is strong empirical evidence #myth2012
NPC@npcnow 

David Kent - tools in evidence-based medicine reveal truth and distort truth in a real way. #myth2012
BustedPancreas@Busted_Pancreas 

Next up: C. Daniel Mullins of @UofMaryland reviews biological & other factors that cause #patient differences #myth2012 #CER
NPC@npcnow

Mullins of @UofMaryland: Advanced prostate cancer offers 1 clear example of individual #patient responses to treatment #myth2012 #CER
NPC@npcnow 

Mullins of @UofMaryland: African-American men twice as likely to die of advanced prostate #cancer than Caucasians #myth2012 #CER
NPC@npcnow 

Mullins of @UofMaryland: Researchers reviewed 92 studies on advanced prostate #cancer to ID factors in different patient outcomes #myth2012
NPC@npcnow 

RT @drworkman: Great collective thinking about treating the individual patient #myth2012
NPC@npcnow 

Mullins of @UofMaryland: Id’ing heterogeneity: cast wide net, use smart lit search, build into prospective research #myth2012
NPC@npcnow 

The gap between good evidence to guide individualized treatments and the need is wide; most HTE subgroup analysis is fair at best #myth2012
Tom Workman@drworkman 

Up now: David Meltzer of @UChicago discusses how #patient preferences affect treatment selection process #myth2012 #CER
NPC@npcnow 

Watch @UChicago’s Meltzer explain views on individual treatment effects & accounting for it in #CER youtu.be/jEo2dtcwx_w #myth2012
NPC@npcnow 

Dr. Meltzer - presenting on self-selection and treatment, effects of age & education with “diabetes.” #myth2012 #morethanonekindofdiabetes
BustedPancreas@Busted_Pancreas 

RT@npcnow:Watch @UChicago’s Meltzer explain views on individual treatment effects & accounting for it in #CER youtu.be/jEo2dtcwx_w #myth2012
Dyan Bryson@InspiredHealth_ 

Why so difficult for researchers to clearly specify whether they are talking about T1 vs. T2 diabetes? #thingsthatdrivemecrazy #myth2012
BustedPancreas@Busted_Pancreas 

Dr.Meltzer makes an important point-patient education affects their treatment choice ultimately affecting therapy's effectiveness #myth2012
Anchal@AKhosla12 

NHC's Weinberg participating in @npcnow #myth2012 - To view NHC's policies and letters related to #CER visit ow.ly/fIafh
Nat. Health Council@NHCouncil 

RT @PCORI: #PCORI welcomes your #CER questions pcori.org/questions #myth2012
Jim Rawson MD@Jim_Rawson_MD 

The average is important if it’s people like me who are in the sample. Daniel Mullins. #myth2012
BustedPancreas@Busted_Pancreas 

RT@npcnow: David Meltzer @UChicago: Greater benefit when treatments match pt prefs. Good pt ed needed to help pts ID& share prefs #myth2012
Dyan Bryson@InspiredHealth_ 

Good doctor-patient relationship is best solution to make decisions in HTE saving money and improving outcomes David Meltzer #myth2012
Tom Workman@drworkman

Presentation Materials

Luncheon With Keynote Presentation

As research defines exactly who is mostly likely to benefit from specific therapies, Dr. Patrick Conway, chief medical officer of the Centers for Medicare & Medicaid Services (CMS), said it is important to develop processes that ensure patients in a given population receive the treatment shown to be effective in that subgroup. Companion diagnostics offer one promising opportunity to help identify which patients are likely to have better outcomes with a specific treatment, he said.

Video

CMS' Conway on Individual Treatment Effects

National Pharmaceutical Council President Dan Leonard sat down with Dr. Patrick Conway, chief medical officer at the Centers for Medicare and Medicaid Services and director of the Office for Clinical Standards and Quality. During their conversation, Dr. Conway discusses how his agency is thinking about individual treatment effects when making coverage decisions, as well as the evidence they consider.

Tweets

Next up: .@CMSGov Chief Medical Officer Patrick Conway provides overview of #CMS quality programs at #myth2012 #healthcare #CER
NPC@npcnow 

MT @drworkman: Good Doc-patient relationship is best solution to make decisions in HTE, saving money & improving outcomes Meltzer #myth2012
Anchal@AKhosla12 

Starting back up. .@CMSGov Chief Medical Officer Patrick Conway welcomed to podium by @NPCNow President Dan Leonard #myth2012
NPC@npcnow 

Conway of .@CMSGov: CMS seeks better health for population, better #healthcare for #patients &lower costs through improvement #myth2012
NPC@npcnow 

Conway of @CMSGov: CMS created Center for Clinical Standards & Quality to improve #health outcomes by transforming health system #myth2012
NPC@npcnow 

Conway of @CMSGov: CCSQ using measurement programs, incentives & regulation to achieve safe, high-quality #healthcare #myth2012 #CER
NPC@npcnow 

Conway of @CMSGov maps out framework for 6 National Quality Strategy priorities at #myth2012
NPC@npcnow 

Conway of @CMSGov: Measure quality in communities, group/system settings, among individual providers #myth2012
NPC@npcnow 

Conway of @CMSGov: Average #CER results can mask differences in treatment effectiveness among #patient subgroups #myth2012
NPC@npcnow 

RT@npcnow: Conway of @CMSGov: Measure quality in communities, group/system settings, among individual providers #myth2012 Go where pts are!
Dyan Bryson@InspiredHealth_ 

Conway of @CMSGov: Companion diagnostics that can ID #patient subgroups like to benefit from #CER #myth2012
NPC@npcnow 

How should the market reward innovation in addressing patient subgroup and HTE needs? Patrick Conway from CMS #myth2012
Tom Workman@drworkman 

Conway of @CMSGov: Developed parallel review option with .@US_FDA to speed consumer access to innovative products #myth2012 #healthcare
NPC@npcnow 

RT @npcnow: Conway of @CMSGov: Companion diagnostics that can ID #patient subgroups like to benefit from #CER #myth2012
Tom Workman@drworkman 

Conway of @CMSGov: Parallel review w/ .@US_FDA voluntary and only done if product sponsor & 2 agencies agree #myth2012 #healthcare
NPC@npcnow 

CMS and FDA parallel review; what are implications for addressing individual patient needs? Questions to Conway CMS #myth2012
Tom Workman@drworkman 

Conway of @CMSGov: Parallel review w/ .@US_FDA in Year 1 of 2-yr pilot project. Manufacturers can explore option, does not commit #myth2012
NPC@npcnow 

Conway of @CMSGov: Registries can be powerful tool to learn what works, establish feedback loops and ID improvement opps #myth2012 #CER
NPC@npcnow 

Conway@cmsgov hints at use/ partnership with org patient registries to collect quality measures for under measured conditions #myth2012
Tom Workman@drworkman 

Next up: .@CMSGov Chief Medical Officer Patrick Conway provides overview of #CMS quality programs at #myth2012 #healthcare #CER
NPC@npcnow

Presentation Materials

Deciphering Heterogeneity for Health Care Decision Making

Payers want to create nuanced policies that address varying patient responses to treatments, but that can be challenging in an environment where scientific evidence of these individual differences is still emerging. A panel of payers and comparative effectiveness research policy experts discussed strategies that are being developed to ensure patients and health care professionals have the flexibility to access needed treatment options and personalized care.

Video

A Payer Tool for Considering Individual Treatment Effects

Dr. Jennifer Graff, director of Comparative Effectiveness Research at the National Pharmaceutical Council, explains that payers are often faced with making coverage decisions using research based on population averages rather than individual treatment effects. She describes a new tool developed by NPC and Precision Health Economics to help payers consider the need for coverage flexibility, along with whether the health plan accommodates what works best for an individual as well as the general population.

Payer Views of Individualized Health Care

Dr. Daniel Malone, professor at the University of Arizona School of Pharmacy, explains how payers view the issue of individualized therapy. He says that while payers have a good understanding of population-based analyses they need more tools to drill down to the patient level and tailor approaches to managing individual patient needs.

Payers and Individual Patient Needs

Paul Martino, SVP of Clinical Strategy and Innovation at WellPoint, Inc., explains that it’s important for payers and other health care stakeholders to understand individual patients’ health care needs. He says that WellPoint has been working on a variety of programs to address this issue, and that they have seen improvements in health care outcomes as a result of these programs.

Tweets

Up next: Panel examines impact #patient differences have on payer policies #myth2012 #CER #healthcare
@npcnow 

Moderated by Marcus Wilson of @ThinkWellPoint #myth2012
@npcnow 

Markus Wilson #myth2012: policy makers have limited subpopulation data to set evidence-based policies for individual healthcare needs
@drworkman 

@npcnow #CER Director Dr Jennifer Graff: many underlying causes, factors to consider in treatment policies #myth2012
@npcnow 

RT @drworkman: Markus Wilson #myth2012: policy makers have limited subpopulation data to set evidence-based policies for individual healthcare needs

Grant #myth2012: States have great diversity in policy on number of drugs covered per condition; what's the right number?
@drworkman 

NPC’s Graff: Tool measures need for flexibility in treatment response diversity, consequences & patient preferences #myth2012 #CER
@npcnow 

Next: @npcnow grantee Daniel Malone of @UofA explains what pharmacy & medical directors need to know about #patient differences #myth2012
@npcnow 

Malone of @UofA: Mean is helpful but it's the variance that's insightful. #CER #myth2012
@npcnow 

Malone of @UofA: Physicians & pharmacists think better understanding of #patient differences will improve safety & quality #myth2012 #CER
@npcnow 

Malone of @UofA: Pharmacy & medical directors have varied levels of understanding of individual #patient differences #myth2012 #CER
@npcnow 

Malone #myth2012: Knowledge of heterogeneity is varied among policy makers; not first issue when making formulary decisions
@drworkman 

Next: Paul Martino of @WellPoint describes how stakeholders can collaborate contain #healthcare costs #myth2012 #CER
@npcnow 

At #myth2012, WellPoint’s Paul Martino talks about how insurers can help consumers make better informed health care decisions.
@pughster 

Martino from WellPoint #myth2012: Employers aren't seeing benefit of individualized care across whole employee population
@drworkman 

Following 3 mtgs today - for all collaboration is the key #econhealth #p4c2012 #myth2012. Why is collaboration so difficult?
@InspiredHealth_ 

Martino of @WellPoint: In 2014, our world changes. Consumer will be king. Right now, we’re lousy at interacting with them. #Myth2012
@npcnow 

Informed healthcare decisions require info on quality, coverage and cost, patient experiences, says WellPoint’s Paul Martino #myth2012.
@pughster 

Martino of @WellPoint: Transparency on coverage, cost, quality, pt satisfaction key to helping members make informed decisions. #Myth2012
@npcnow 

At #myth2012, WellPoint’s Paul Martino talks about how insurers can help consumers make better informed health care decisions
@ThinkWellPoint 

RT @ThinkWellPoint: At #myth2012, WellPoint’s Paul Martino talks about how insurers can help consumers make better informed health care decisions
@npcnow 

At #myth2012, WellPoint’s Paul Martino talks about how insurers can help consumers make better informed health care decisions.
@WellPoint 

RT @thinkwellpoint: At #myth2012, #WellPoint Paul Martino talks about how plans can help consumers make better/informed healthcare decisions
@WellPointGovRel 

It’s a myth that costs are the same for all providers, says WellPoint’s Paul Martino. #myth2012.
@pughster 

Consumers say their most important health decision-drivers are their coverage, quality and easy access to their doc, says Martino. #myth2012
@pughster 

Healthcare is no different than any other industry. Consumers can shop for value. #myth2012
@pughster 

Paul Martino (WellPoint) - putting people into disease buckets didn’t work. #myth2012
@Busted_Pancreas 

WellPoint’s Paul Martino at #myth2012 says informed healthcare decisions require info on quality, coverage and cost, patient experiences.
@WellPoint 

RT @ThinkWellPoint: Informed healthcare decisions require info on quality, coverage and cost, patient experiences- Paul Martino #myth2012
@InspiredHealth 

Martino of @WellPoint: Radiology management program educates mmbrs on imaging options. Half chose not to pursue. #myth2012
@npcnow 

If consumers don’t know how to use their benefits, they won’t be using them effectively, Martino says. #myth2012
@pughster

Informed healthcare decisions require info on quality, coverage and cost, patient experiences, says WellPoint’s Paul Martino #myth2012
@ThinkWellPoint 

Martino of @WellPoint: Members share in savings of using low-cost imaging services #healthcare #myth2012
@npcnow 

Martino at WellPoint #myth2012 shared exciting innovations in helping employees and consumers make better choices.
@drworkman 

Up now: Lewis Sandy of @UHG_AARP_LA discusses effects of individual #patient differences on #healthcare #myth2012
@npcnow 

Insurers can help consumers by providing transparency on cost and quality, says WellPoint’s Paul Martino. #myth2012
@pughster 

RT @drworkman: Martino at WellPoint #myth2012 shared exciting innovations in helping employees and consumers make better choices.
@npcnow 

Sandy of @UHG_AARP_LA: Genomic data opening doors to better understand individual #patient differences #CER #myth2012
@npcnow 

Sandy of @UHG_AARP_LA: Consumers must navigate a complex & fragmented #healthcare system #myth2012 #CER
@npcnow 

It’s a myth that costs are the same for all providers, says WellPoint’s Paul Martino. #myth2012
@ThinkWellPoint 

Sandy of @UHG_AARP_LA: Working to build “Accountable Care Platform” Goal to create incentives for high value. #Myth2012
@npcnow 

Sandy of @UHG_AARP_LA: UHG is creating nuanced policies when supporting evidence is available #myth2012 #CER
@npcnow 

BCBSA’s Find a Doctor tool is an example of a consumer-friendly tool that provides info consumers want. #myth2012
@pughster 

Consumers say their most important health decision-drivers are their coverage, quality and easy access to their doc, says Martino. #myth2012
@ThinkWellPoint 

Sandy of @UHG_AARP_LA: Personalized data & analytics help simplify the process for consumers #myth2012 #CER
@npcnow 

Sandy of @UHG_AARP_LA: Industry needs to address #patient questions & put innovations to use quickly. Will need big data. #myth2012
@npcnow 

Sandy of United Healthcare #myth2012: We need to speed up the pace on research and deployment to meet nuanced care. Wonder how we do it.
@drworkman 

Sandy of @UHG_AARP_LA: Stakeholders need to work together to promote high-value innovation. #Myth2012 #CER
@npcnow 

BCBSA’s Find a Doctor tool is an example of a consumer-friendly tool that provides info consumers want. #myth2012
@ThinkWellPoint 

Sandy of @UHG_AARP_LA on role of employers: many are looking for ways to be innovative and drive value. #Myth2012 #CER
@npcnow 

RT @pughster: Insurers can help consumers by providing transparency on cost and quality, says WellPoint’s Paul Martino. #myth2012
@AKhosla12 

If consumers don’t know how to use their benefits, they won’t be using them effectively, Martino says. #myth2012
@ThinkWellPoint 

RT@npcnow: Sandy, @UHG_AARP_LA -role of employers:many are looking for ways to be innovative and drive value #Myth2012 #CER Pharma get this!
@InspiredHealth 

RT @ThinkWellPoint: If consumers don’t know how to use their benefits, they won’t be using them effectively, Martino says. #myth2012
@InspiredHealth_ 

Insurers can help consumers by providing transparency on cost and quality, says WellPoint’s Paul Martino. #myth2012
@ThinkWellPoint 

#patients need to be educated about their disease state, treatments, & how to use their benefits to make informed health decisions #myth2012
@AKhosla12 

Conway of @CMSGov:Broad yes/no natl coverage decisions .@CMS rarer, more sub-pop spec decsns; encourages #pharma to study sub-pops #myth2012
@npcnow 

Wilson of @ThinkWellPoint poses Q - How will pay for performance affect paradigm? #Myth2012
@npcnow 

A: Sandy @UHG_AARP_LA: Systems need to be mindful abt treatments but are they able to analyze impact & assess total value? #Myth2012
@npcnow 

While we take a break, check out @npcnow President Dan Leonard’s commentary on individualized #healthcare #myth2012 bit.ly/TqwIrI
@npcnow

Presentation Materials

Issues and Opportunities on the Journey to Individualized Care

Patients are hungry for more information about how they will likely respond to a given treatment and what potential side effects they might experience, according to a panel of patient advocacy experts. Although researchers are making progress in mapping some biomarkers, more evidence is still needed to help patients and health care professionals navigate the decision-making process. To address these needs, panelists agreed patients must remain at the forefront of the comparative effectiveness research conversation.

Video

Cancer and the Importance of Individual Treatment Effects

Dr. Ellen Sigal, Chairperson and Founder of Friends of Cancer Research, explains the importance of individual treatment effects, especially for cancer patients. She says that ultimately, they need treatments that work for them the first time around.

We spoke with Dr. Sigal during "The Myth of Average: Why Individual Patient Differences Matter," a conference focusing on issues related to individual treatment effects.

Dr. Allison-Ottey on Individualized Patient Care

Dr. Sharon Allison-Ottey, executive director of the COSHAR Foundation, explains that when it comes to ensuring optimal care for patients, all of medicine must be individualized. It is also very important, she notes, to share health care information in a way that patients and their providers can understand and act upon it.

We spoke with Dr. Allison-Ottey during "The Myth of Average: Why Individual Patient Differences Matter," a conference focusing on issues related to individual treatment effects.

Tweets

Next up: Panel illuminates #patient perspective on individual treatment differences & #healthcare. #myth2012 #CER
@npcnow 

Ellen Sigal of @CancerResrch: We have a huge system that's siloed. Can't address probs that affect pts w/out collaborating. #Myth2012 #CER
@npcnow 

Myrl Weinberg of @NHCouncil: Payers must incentivize providers to talk to their pts We’ll save money, pts will be more satisfied. #Myth2012
@npcnow 

Sharon Allison-Ottey, MD of COSHAR Fndtn @DoctorSharonAO: On weighing treatment options: let the doctor be the doctor. #Myth2012 #CER
@npcnow 

Mullins of @UofMaryland:Importance of side effects will be diffnt in each pt. Don’t penalize patient for having unique needs. #Myth2012
@npcnow 

RT@npcnow: Ellen Sigal,@CancerResrch: We have a huge siloed system. Can't address probs that affect pts w/o collaborating #Myth2012 #CER
@InspiredHealth_ 

Ellen Sigal of @CancerResrch: Shouldn't force cancer pts to fail firstline treatments before they can get newer options. #cancer #Myth2012
@npcnow 

Myrl Weinberg of @NHCouncil: Large or small, patient groups have common concern about treating pts as individuals in #healthcare #Myth2012
@npcnow 

Thanks to @npcnow for leading on what really needs to happen to create truly patient-centered research and treatments #Myth2012
@CancerResrch 

Dubois of @npcnow asks panelists: What about state health exchanges? #Myth2012 #CER #healthcare
@npcnow 

“@npcnow: Check out @npcnow President Dan Leonard’s commentary on individualized #healthcare #myth2012 bit.ly/TqwIrI
@MiriamETucker  

@DoctorSharonAO of COSHAR: Imp strides but voice of pt and provider needs to be heard. Variability in benfts a mjr issue. #Myth2012 #CER
@npcnow 

Myrl Weinberg of @NHCouncil: Wrking for strong pt navigation, oversight. Help pts find what offers them the most at best $. #Myth2012
@npcnow 

Ellen Sigal of @CancerResrch: Keep in mind #PCORI is getting it right; will integrate pt needs in research. #Myth2012 #CER #healthcare
@npcnow 

“@npcnow: Ellen Sigal of @CancerResrch: Shouldn't force #cancer pts to fail 1st line tx before they can get newer options. #Myth2012
@MiriamETucker 

Myrl Weinberg of @NHCouncil: Must ID most pressing Qs on subpops. To answer, need good & consistent data. #Myth2012 #CER
@npcnow 

@DoctorSharonAO of COSHAR: We don’t need every biomarker. ID what will have most impact on pts and outcomes. #Myth2012 #Outcomes #CER
@npcnow

Summary and Adjournment

The event’s panels and presentations gave stakeholders new insights into both the potential and limitations of the research data that is available today. As it becomes easier to obtain large data sets, NPC President Dan Leonard said there will be new opportunities to address patients’ most pressing questions. Patients and caregivers are looking for ways they can be engaged in the research process and weigh in on the direction studies take.

Tweets

@NPCNow President Dan Leonard wrapping up the panel: It takes big data to ask small questions. #Myth2012 #CER

NPC@npcnow TY to all who joined today’s tweeting on #Myth2012 @PCORI @CancerResrch @NHCouncil @MiriamETucker @ThinkWellPoint @IAmBiotech

NPC@npcnow TY for tweeting! #Myth2012 @HealthinFocus @InspiredHealth_ @AKhosla12 @drworkman @pughster @Busted_Pancreas @sleepapnea_ed @NationalGrange

Paul Martino of @WellPoint Lewis Sandy of @UHG_AARP_LA & Jennifer Graff of @npcnow at #Myth2012 http://pic.twitter.com/E0K1Skfx

We'll be adding more information and resources at npcnow.org/myth2012 - so check back soon! #Myth2012 #CER
NPC@npcnow 

Thank you to our speakers and attendees for making today such a great event! #myth2012 #CER
NPC@npcnow 

So grateful to sponsors @NHCouncil & @ThinkWellPoint for their help putting together this event. #myth2012
NPC@npcnow 

TY to #myth2012 cosponsors @Aging_Research @AACPharmacy @AARDATweets @AOAforDOs @IAmBiotech @Easter_Seals @CancerResrch @HealthInFocus
NPC@npcnow 

TY to #myth2012 cosponsors @HealthHIV @MensHlthNetwork NAHH @NAMI NASPA @NationalGrange @NMQF @pfcd @newsfromPMC
NPC@npcnow 

RT @npcnow: TY to #myth2012 cosponsors @Aging_Research @AACPharmacy @AARDATweets @AOAforDOs @IAmBiotech @Easter_Seals @CancerResrch @HealthInFocus
Elin Silveous@ElinSilveous 

RT @npcnow: TY to #myth2012 cosponsors @HealthHIV @MensHlthNetwork NAHH @NAMI NASPA @NationalGrange @NMQF @pfcd @newsfromPMC
Elin Silveous@ElinSilveous 

RT @npcnow: So grateful to sponsors @NHCouncil & @ThinkWellPoint for their help putting together this event. #myth2012
Elin Silveous@ElinSilveous 

THANK YOU! RT @npcnow: We'll be adding more information and resources at npcnow.org/myth2012 - so check back soon! #Myth2012 #CER
Dyan Bryson@InspiredHealth_ 

RT @npcnow: We'll be adding more information and resources at npcnow.org/myth2012 - so check back soon! #Myth2012 #CER
TheEvidenceDoc@TheEvidenceDoc

Presentation Files