Putting Patients First®: Paving a Path to Useful CER

Sept. 30, 2013 | W Hotel | Washington, DC

How do patients, providers, and payers know whether health information is credible, accurate, useful or appropriate?

Comparative effectiveness research (CER) has the potential to improve health outcomes by helping people make better-informed decisions. But how do we know that CER will generate information that is useful?

On September 30, 2013, the National Pharmaceutical Council and the National Health Council hosted a conversation and symposium featuring a broad range of health care stakeholders—patients, providers, policymakers, payers, researchers, and those who fund research. The conversation focused on an effort led by the National Health Council to create a framework to guide the development of CER, evaluate its results, and assist in communicating the findings to the right audiences.

Overview

Engaging patients throughout the research process is an important part of ensuring that the resulting research is meaningful, trustworthy and translatable, according to health care stakeholders who gathered for an interactive symposium in Washington, DC on September 30, 2013.

During the symposium, “Putting Patients First®: Paving a Path to Useful CER,” stakeholders provided feedback on a draft set of “usability” criteria to assist in the evaluation of comparative effectiveness research (CER) findings. The criteria, developed by the National Health Council and Avalere Health, are meant to help researchers prioritize study questions and to help patients and their health care providers determine whether CER findings are relevant to them and can be trusted for use in making treatment decisions. 

The symposium was sponsored by the National Pharmaceutical Council and National Health Council, along with cosponsors the Patient-Centered Outcomes Research Institute and PhRMA.

Pre-Event Tweets

  • #CER Daily Newsfeed: Myth of Average: Why Individual #Patient Differences Matter; Paving a Path to Useful CER bit.ly/1amcEx9 #usecer (NPC)
  • Join me at Putting Patients First®: Paving a Path to Useful CER! regonline.com/usecer #usecer | Powered by #RegOnline (jaye bea smalley)
  • Putting Patients First®: Paving a Path to Useful #CER - event on 9/30. Register: ow.ly/pc2uB or follow along that day w/ #useCER (ACRO)
  • Haven't signed up for 9/30 "Paving a Path to Useful CER?" It's not too late! Register: ow.ly/p40h4 #healthcare #usecer (Nat. Health Council)
  • New white paper: Evaluating the Usability of #CER for #Patient & Provider Decision Making @NHCouncil ow.ly/pfxvG #UseCER (Avalere Health)
  • What is usable #CER? A new report from Avalere & @NHCouncil ask the question & discusses possible answers. ow.ly/pfxH6 #UseCER (Avalere Health)
  • We're getting excited for Monday's symposium on useful CER. Follow the conversation via #useCER! ow.ly/phxdn (Nat. Health Council)
  • Join me at Putting Patients First: Paving a Path to Useful CER! regonline.com/usecer #usecer | Powered by #RegOnline (Mary Anne Sterling)
  • Paving a Path to Useful CER. Looking forward to a day of learning! #idfehealthrecord #useCER (Colin Seal)
Agenda

9:00-10:00 Registration & Continental Breakfast

10:00-10:15 Welcome

  • Myrl Weinberg, FASAE, CAE, Chief Executive Officer, National Health Council
  • Dan Leonard, MA, President, National Pharmaceutical Council

10:15-11:15 Setting the Stage for CER Usability

  • C. Daniel Mullins, PhD, Professor, Pharmaceutical Health Services Research, School of Pharmacy, University of Maryland

11:15-11:45 Evaluating the Usability of CER for Patient and Provider Decision Making

  • Sung Hee Choe, Senior Manager, Avalere Health

11:45-12:00 Break

12:00-1:00 Working Lunch: Presentation on Straw Man Usability Criteria

  • Marc Boutin, JD, Executive Vice President and Chief Operating Officer, National Health Council

1:00-1:50 Discussion on Usability Criteria

  • Jennifer L. Bright, MPA, Senior Advisor, Avalere Health

1:50-2:00 Break

2:00-2:30 Discussion on Usability Criteria (continued)

2:30-3:00 Concluding Remarks

  • Robert Dubois, MD, PhD, Chief Science Officer, National Pharmaceutical Council
  • Marc Boutin, JD, Executive Vice President and Chief Operating Officer, National Health Council

3:00 Adjourn

Lodging & Travel

The W Hotel is located at 515 15th Street NW, Washington, DC 20004. A block of guest rooms has been reserved for attendees at a rate of $269 plus tax per night. Individuals are asked to make their own hotel reservations. The cut-off date for reservations in the group room block is Monday, September 9. Please call the hotel directly at (202) 661-2400 and reference the usability criteria conference to obtain the group rate. Reservation requests received after the cut-off date will be accepted at the hotel’s prevailing rate, based on availability.

Contact

Questions about the conference?

Contact: Kathryn Gleason, (202) 827-2084

Sessions

Welcome

Myrl Weinberg, chief executive officer of the National Health Council, said that many patients are still concerned about how CER will be conducted and used to make treatment decisions. Patients want to make sure that CER does not result in a "one-size-fits-all" approach to health care and that it will be used in appropriate ways. Usability criteria could make this evaluation process much clearer for decision makers, she noted.

The usability criteria have been in the works for some time, noted National Pharmaceutical Council (NPC) President Dan Leonard. Usability criteria were first under discussion as part of the Affordable Care Act in 2010, but they were not included in the final law. Since that time, NPC, along with NHC and other organizations, have continued to lead conversations about how stakeholders can use and communicate CER, resulting in a cluster of Health Affairs articles and a briefing last October.

Tweets

  • Now starting: Putting patients first: paving a path to useful #CER bit.ly/1eTYrwt #usecer (NPC)'
  • Myrl Weinberg of @nhcouncil welcoming participants at Putting #Patients First: Paving a Path to Useful #CER #usecer (NPC)
  • .@nhcouncil Weinberg: #patients unfamiliar w/terms #CER & evidence-based medicine; concerned it might be one-size-fits-all approach #usecer (NPC)
  • Glad you can participate! RT @ColinRSeal Paving a Path to Useful CER. Looking forward to a day of learning! #idfehealthrecord #useCER (NPC)
  • RT @npcnow: Myrl Weinberg of @NHCouncil welcoming participants at Putting #Patients First: Paving a Path to Useful #CER #usecer (Nat. Health Council)
  • Weinberg: purpose of today's mtg is to get feedback from #patients on usability criteria for #CER; this is just beginning of process #usecer (NPC)
  • .@nhcouncil Weinberg: ultimate goal: research must involve #patients throughout research process from the question to dissemination #usecer (NPC)
  • NPC pres Dan Leonard: conversation today is b/c usability criteria werent incl in #ACA; useful #CER needed for better decisionmkg #useCER (NPC)
  • Patients are concerned about a "a one size fits all" approach. Especially scary for those with chronic illness. #useCER @IDFCommunity (Colin Seal)
  • NPC Leonard: Spotlight on #patient & usability criteria highlighted in @health_affairs last year bit.ly/17j1tpq #usecer (NPC)
  • MT @npcnow: @NHCouncil Weinberg: patients unfamiliar w/terms #CER & evidence-based medicine; concerned it might be 1-size-fits-all #usecer (Nat. Health Council)
  • "Turning Patient Engagement into a useful criteria." Dan Leonard @npcnow #useCER #idfehealthrecord (Colin Seal)
  • NPC Leonard: Thanks to our conference sponsor @NHCouncil & co-sponsors @PCORI & @PhRMA #UseCER (NPC)
  • MT @ColinRSeal: Patients concerned about "a one size fits all" approach. Especially scary for those w/chronic illness #useCER @IDFCommunity (Nat. Health Council)
  • Looking forward to great discussions at conference on CER usability criteria today! Follow #usecer (Jennifer Bright)
  • MT @npcnow: NHC Weinberg: ultimate goal: research must involve #patients throughout research process from question to dissemination #usecer (Nat. Health Council)
  • Attending @NHCouncil @npcnow mtg Putting Patients 1st: Paving the Way to Useful CER. We'll feed back on CER usability criteria. #usecer (Kim McCleary)

Setting the Stage for CER Usability

Dr. C. Daniel Mullins, professor of pharmaceutical health services research at the University of Maryland School of Pharmacy, explained that engaging patients throughout the research process will help to ensure that the research performed “is meaningful in the end.” “If you ask [patients] how they would phrase the question, then it’s easier to phrase the results into something they can understand,” Dr. Mullins said.

There are different ways to engage patients, such as meeting with them at health care facilities or at institutions like churches, he said, but “pre-engagement”—before the research begins—is also a key part of it. “You have to meet patients where they are. If you take time to listen, we get to the question more quickly, so it’s easier to find the answer,” he said.

Dr. Mullins added, “If the patients don’t understand the question, then they could provide us with data that’s not accurate information. If we then use that to make a decision that’s informed by that data, then they won’t be making the right decisions.”

Tweets

  • Up next: C. Daniel Mullins of @umsop will set the stage on why discussing #CER usability matters #UseCER (NPC)
  • Patients are concerned about a "a one size fits all" approach. Especially scary for those with chronic illness. #useCER @IDFCommunity (Colin Seal)
  • What does being engaged mean to you? - C. Daniel Mullins, U of Maryland.@IDFCommunity #useCER #idfehealthrecord (Colin Seal)
  • Mullins: #patient engagement at every step transforms #CER into patient-centered outcomes research #PCOR #usecer (NPC)
  • RT @npcnow: Mullins: #patient engagement at every step transforms #CER into patient-centered outcomes research #PCOR #usecer (Nat. Health Council)
  • Mullins: #patient engagement in research is continuous process; requires trust, respect; pre-engagement is critical #PCOR #usecer (NPC)
  • Mullins: #patient engagement in research should involve diverse patients, incl hard to reach patients #PCOR #usecer (NPC)
  • How do you explain meaningful vs heavier workload for the patient? Chronic illness patients may be engaged on different priorities. #useCER (Colin Seal)
  • Mullins: Pt engagement depends on meeting patients where they are, physically, educationally, culturally, emotionally. #useCER (Kim McCleary)
  • Mullins: Ingredients for building trust/respect w/ #patients? Pre-engaging, relate, communicate, “be there” #CER #UseCER (NPC)
  • RT @npcnow: Mullins: #patients help frame #research questions, answers, cultural awareness; helps w/patient activation #usecer #PCOR (Nat. Health Council)
  • Mullins: identifying => partnering => explaining => doing => updating + constant building of trust & respect = true engagement. #useCER (Kim McCleary)
  • Mullins: #Patient engagement critical in research continuum - in topic ID, study design, process, implementation #UseCER (NPC)
  • Mullins: For #CER, outlines 10-step #patient engagement process 1) Topic solicitation 2) Prioritization 3) Framing the question #UseCER (NPC)
  • Mullins: #CER 10-steps 4) Comparators/ outcomes selection 5) Conceptual framework 6) Plan analysis 7) Data collection… #UseCER (NPC)
  • Learning more about comparative effectiveness research #CER that put patients 1st @NHCouncil & @npcnow sponsored event #useCER #MSactivist (MS Activist)
  • MT @KimTweetsDC Mullins: identifying=> partnering=>explaining=>doing=>updating+ constant building of trust & respect=true engagement #useCER (NPC)
  • Mullins: #CER 10-step process 8) Reviewing & Interpreting Results 9) Translation 10) Dissemination #UseCER #PCOR (NPC)
  • Mullins: Factors in “hard to reach” #patients? Impairments, illnesses, age, where they live, social indicators, what they do #CER #UseCER (NPC)
  • Mullins: "Hard to reach"can go both ways! #Patient <==> #Researcher #useCER (Colin Seal)
  • "Let the patient decide how they define themselves" -Mullins #useCER (Colin Seal)
  • RT @ColinRSeal Mullins: "Hard to reach"can go both ways! #Patient <==> #Researcher #useCER (NPC)
  • #usecer comparative effectiveness research asking the right front end question to reach the right back end answer (Thaïs)
  • Mullins: Keys to successfully communicating with hard to reach patients? Plain language, “teach back” approaches #CER #UseCER (NPC)
  • MT @MSactivist Learning more abt #CER that put patients 1st @NHCouncil & @npcnow sponsored event #useCER #MSactivist (NPC)
  • Mullins: "Giving back relates to what the community needs." #useCER (Colin Seal)
  • #usecer patient engagement pre, during, post research activity - meet patients where they are - be trustworthy - culturally relevant (Thaïs)
  • Mullins: Trust is key factor in decision-making process of hard-to-reach populations engaging in research. Takes time to build. #useCER (Kim McCleary)
  • Mullins: " We update our #research sponsors, why not the #patient?" #useCER (Colin Seal)
  • Listening to Daniel Mullins on importance of patient engagement in CER at "Putting Patients First" #usecer (jacqueline mallender)
  • RT @thaimcneal: #usecer comparative effectiveness research asking the right front end question to reach the right back end answer (Nat. Health Council)

Evaluating the Usability of CER for Patient and Provider Decision Making

The “Putting Patients First®” symposium marked a key point in the development of the draft usability criteria, which were developed months earlier during a stakeholder dialogue, said Avalere Health Senior Manager Sung Hee Choe. She said the criteria could be a tool to help researchers prioritize research questions and to help patients distill the vast amount of health care information available to them.

Following the feedback from conference participants, the National Health Council plans to further refine the criteria and seek feedback and testing during workshops in coming months.

Tweets

  • Up next: Sung Hee Choe of @avalerehealth to discuss paper: Evaluating Usability of #CER for #Patient & Provider Decision Making #UseCER (NPC)
  • Remembering that "we are they" good advice for understanding patient engagement in CER from Myrl Weinberg #usecer (jacqueline mallender)
  • MT @jacquemallender: Remembering "we are they" good advice for understanding patient engagement in CER from Myrl Weinberg @NHCouncil #usecer (Kim McCleary)
  • Choe: Goal of dialogue on #useCER corroborate/define/agree/discuss. (Colin Seal)
  • Choe: Definition of usable #CER: asks best questions, uses best methods, communicated via best approach #usecer #PCOR (NPC)
  • .@NHCouncil convened dialogue w/ @avalerehealth to determine factors most relevant in #CER usability #UseCER ow.ly/pfxH6 (NPC)
  • RT @ColinRSeal Choe: Goal of dialogue on #useCER corroborate/define/agree/discuss. (NPC)
  • Choe: when evaluating #CER, research must be meaningful, trustworthy, translatable #usecer (NPC)
  • Hmmm, mis-use of CER being turned into a one size fits all approach? Seems counter productive. Must have #cerpatientengagement #useCER (Colin Seal)
  • MT @PIPCpatients Join todays @NHCouncil & @NPCnow symposium addressing development of #CER usability criteria bit.ly/18knIuM #usecer (NPC)

Working Lunch: Presentation on Draft Straw Man Usability Criteria

Tweets

  • On a break at Putting Patients First: Paving a Path to Useful CER; read @NHCouncil & @avalerehealth paper at ow.ly/pfxH6 #usecer (NPC)
  • .@nhcouncil Chief Exec Officer Myrl Weinberg speaks at Putting #Patients 1st: Paving a Path to Useful #CER #usecer http://twitter.com/npcnow/status/384708478746370048/photo/1 (NPC)
  • Up next: Marc Boutin of @NHCouncil to sketch out “Straw Man” on usability criteria for #CER #UseCER (NPC)
  • Another photo from this morning, NPC Pres Dan Leonard at Putting #Patients 1st: Paving a Path to Useful #CER #usecer http://twitter.com/npcnow/status/384712100255260672/photo/1 (NPC)
  • By being told what care will be provided, patients naturally assume they are getting the most effective! Not so! Mark Boutin. #usecer (jacqueline mallender)
  • Mark Boutin. The arc of public engagement problem solution and saliency. And CER useable at point of care. #usecer (jacqueline mallender)
  • #useCER: Doing Research Differently (Colin Seal)
  • Arc of Public Engagement: must have a problem, a solution and some saliency. #useCER (Colin Seal)
  • RT @jacquemallender Mark Boutin. The arc of public engagement problem solution and saliency. And CER useable at point of care. #usecer (NPC)
  • RT @ColinRSeal Arc of Public Engagement: must have a problem, a solution and some saliency. #useCER (NPC)
  • RT @jacquemallender: Mark Boutin. The arc of public engagement problem solution and saliency. And CER useable at point of care. #usecer (Nat. Health Council)
  • Boutin: What are elements of “usability” in @NHCouncil white paper? Meaningful, trustworthy, translatable #UseCER (NPC)
  • MT “@SterlingHIT: 9/30 Putting Patients First: Paving a Path to Useful CER! regonline.com/usecer #usecer " wish it was streamed #s4pm (brett johnson)
  • Boutin: Meaningful=Research Q addresses info needs of #patients & HCPs, adds to clinical understanding when placed in context #UseCER (NPC)
  • Boutin: What are elements of “usability” in @NHCouncil white paper? Meaningful, trustworthy, translatable #UseCER (NPC)
  • Boutin: Trustworthy=Transparent methods, highlights limitations, balanced view on risks/benefits, discloses factors behind study #UseCER (NPC)
  • Too little attention is paid to side effects and quality of life. Effective Patient engagement in CER should help #usecer (jacqueline mallender)
  • .@avalerehealth's Sung Hee Choe on usability criteria at Putting Patients 1st: Paving Path to Useful #CER #usecer http://twitter.com/npcnow/status/384718093299089409/photo/1 (NPC)
  • Boutin: "Information on its own does very little, it's the application of that information that matters." EXACTLY! #useCER (Colin Seal)
  • Boutin: These 3 domains can help identify research that has greatest potential to be usable for patients & providers #UseCER (NPC)
  • Meaningful outcomes and from whose perspective. Vital for truly informed patient choice about treatment options. #usecer (jacqueline mallender)
  • .@icer_review's President Dr Steve Pearson asks question at Putting #Patients 1st conference #usecer http://twitter.com/npcnow/status/384718553007415297/photo/1 (NPC)
  • RT @jacquemallender Meaningful outcomes and from whose perspective. Vital for truly informed patient choice about treatment options. #usecer (NPC)
  • Who are the trusted sources to advise patients on CER? Answers on a postcard please?#usecer (jacqueline mallender)
  • RT @ColinRSeal: #useCER: Doing Research Differently (Nat. Health Council)

Discussion on Usability Criteria

Tweets

  • Up next: Jennifer L. Bright of @avalerehealth kicks off usability criteria discussion #UseCER (NPC)
  • RT @ColinRSeal Boutin: "Information on its own does very little, it's the application of that information that matters." EXACTLY! #useCER (NPC)
  • Comp effectiveness research - It's not just abt u, its abt u + ur current context/predicament #usecerMark D. Lim
  • Bright: Looking for feedback on usability criteria, what will be most helpful to #patients, work best for them #usecer (NPC)
  • #useCER demystifying "The Myth Of Average: Why Individual Patient Differences Matter" @npcnow.org (Thaïs)
  • Tnx! RT @thaimcneal #useCER demystifying "The Myth Of Average: Why Individual Patient Differences Matter" @npcnow.org (NPC)
  • CER findings are most important to which group? How would you answer? #usecer (Colin Seal)
  • RT @markdlim Comp effectiveness research - It's not just abt u, its abt u + ur current context/predicament #usecer #CER (NPC)
  • .@avalerehealth’s Bright leading discussion abt which r most important/effective criteria 4 evaluating #CER; what r least helpful? #usecer (NPC)
  • @npcnow @avalerehealth #CER #usecer its very hard! Think I need to ask a patient! (jacqueline mallender)
  • Reminder abt related white paper: Evaluating the Usability of #CER for #Patient & Provider Decision Making bit.ly/160e7JY #UseCER (NPC)
  • .@umsop's Dr Dan Mullins spoke this morning at Putting Patients 1st: Paving a Path to Useful #CER #usecer http://twitter.com/npcnow/status/384730497714106368/photo/1 (NPC)
  • #usecer - it's about transparency between all parties involved!(Colin Seal)
  • What role does @patientslikeme have in the debate on useability of CER. Trust peers? #usecer (jacqueline mallender)
  • #useCER trustworthy criterion - we have to define trustworthy to include social forces on decision making. (Colin Seal)
  • RT @ColinRSeal: Boutin: "Information on its own does very little, it's the application of that information that matters." EXACTLY! #useCER (Nat. Health Council)
  • .@NHCouncil convened dialogue w/ @avalerehealth to determine factors most relevant in #CER usability #UseCER ow.ly/plZ (Sw HealthCore)
  • RT @ColinRSeal #useCER trustworthy criterion - we have to define trustworthy to include social forces on decision making. (NPC)
  • .@nhcouncil's EVP & COO Marc Boutin speaks at Putting #Patients 1st: Paving a Path to Useful #CER #usecer http://twitter.com/npcnow/status/384743613172699137/photo/1 (NPC)
  • #usecer don't forget about the patient! It's our data that makes your research. #balance is key! (Colin Seal)

Concluding Remarks

  • How does a patient combat #cer when it's used against them? I ask from personal experience? #usecer (Colin Seal)
  • @npcnow @NHCouncil Great job today at the #usecer conference. Hoping to stay involved with @IDFCommunity and continue the discussion! (Colin Seal)
  • Tnx! Glad you could join us MT @ColinRSeal @npcnow @NHCouncil Great job 2day at #usecer conference. Hoping to stay involved w/ @IDFCommunity (NPC)
  • @npcnow @NHCouncil great conference on #useCER look forward to continuing the dialogue, hearing the patients voice - those who aren't heard! (Thaïs)