Innovative Patient-Controlled Registry Invites Liver Patients to Engage

April 5th, 2013 by DCPatient No comments »

See Video:  Patient-Centered Drug Discovery in Liver Cancer

Help Me Spread the Word!  Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Today (April 5, 2013)  I am honored to present at the 3rd Annual CanLiv Research Symposium on Hepatobiliary Cancers, on the topic of “Putting Patients at the Center of Drug Discovery”. CanLiv is a vibrant and vital organization in the liver community, founded by Dr. Melanie B Thomas, Associate Professor, Associate Clinical Director of the Hollings Cancer Center and Grace E. DeWolff Professor of Medical Oncology at the Medical University of South Carolina, to support patients with liver cancer and catalyze new research.

Liver cancer or hepatocellular carcinoma (HCC) is the 5th most common cancer in the world and the 3rd leading cause of cancer death.  Unlike many other cancers in the U.S. liver cancer rates are rising. Yet there is only one FDA-approved medication for liver cancer, sorafenib (nexavar), although for some patients surgical or radiation therapies are appropriate. indicates that there are 741 liver cancer studies currently recruiting patients.  One of the largest limiting factors for finding additional treatment alternatives are the low number of liver cancer patients who are participating in clinical research. Only 3-4% of cancer patients and 1-2% of liver patients participate in clinical trials.

I’d like your help in transforming how patients are involved in clinical research. I want to see participation in clinical research, as agenda-setters, outcome-selectors, study-designers, as well as subjects, become the norm for patients in liver disease ( and all conditions!).  One of the new tools to help do this is Registries for All (Reg4All), , a novel patient-controlled online platform for sharing health information with researchers and each other developed by respected non-profit patient advocacy organization Genetic Alliance .  It has already won awards  and started to hit tech publications.

Most people think that registries are only for bridal or baby shower gifts, but registries, repositories for identified and de-identified health information, have the potential to accelerate the research process.

Reg4All is unique because:

¨  Permission to search, discover, access, use and share any data in the registry is 100% participant-controlled

¨  For all individuals – healthy and all conditions (most registries are siloed and of limited use to someone like me with multiple conditions)

¨  Entering information is fun, instead of tedious due to a gamified survey powered by Traitwise®

¨  Each participant controls his or her information through dynamic granular sharing settings – who, how, when and if data is shared thanks to PrivateAccess™ technology

¨  With the individual’s permission, this data is searchable by researchers in real-time through RecruitSource

Liver cancer, and liver research in general is in need of innovation.  My vision is that it can be transformed from the inside out by patients who are active partners in driving that innovation. Reg4All only realizes its potential if patients embrace it.

¨  Empowering  liver patients by valuing patient-generated health data

¨  Engaging liver patients by providing real-time feedback on comparison to others

¨  Entrusting patients with control over if, when, how, and with whom their health data is shared

¨  Representing the whole person rather than individual conditions and disease states (GI, Liver, Immune, Cancer, Biomarkers)

¨  Enriching and enlarging pool of patients to accelerate recruitment through community participation

¨  Reducing frustration and complexity of finding trials

Please help spread the word, particularly to patient advocates, liver and liver cancer patients.  Mention Reg4All in all of your communication vehicles Friday and moving forward.

Thank you!


Liver pts take control of your health data to speed health breakthroughs, B discovered 4 clinical trials. #Reg4All #CanLiv

Facebook/Online Communities:

Friday April 5th patients and family members living with liver disease are invited to try Registries for All (Reg4All) to share their health information, discover clinical research opportunities, and speed innovation in drug discovery for liver diseases.

Reg4All is unique in 2 ways:

1. It operates across all health and disease conditions. (So more likely to identify research opportunities from correlations between IBD, CF, liver disease, and liver cancers)


2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything.





Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Speeding up the pace of innovation and new drug development is vital for individuals with liver disease.

Research seeks to discover safer, more effective, or easier to tolerate treatments and therapies – therapies that may improve prolong or save your life or patients like you.

Research can’t happen without patients willing to learn more about clinical studies and choosing to participate in studies that are right for them.

As a liver transplant survivor and the former president of the American Liver Foundation, I am excited to partner with Genetic Alliance, a national non-profit advocacy association, to promote a novel solution that makes finding and being found for a clinical trial easier — Registries for All (Reg4All).

If you or a loved one has liver cancer, cirrhosis, hepatitis, and other forms of liver disease, please explore Reg4All so we can all help each other.

Reg4All features TrialsFinder which provides a new, effective way to match individuals who are willing to participate in research with researchers looking for them.  Our top priority is helping you to find research projects that are useful you, making it easy for researchers to find you, while allowing you to control how, when, and if your information is shared.

Please join us in this by visiting

Portal Hypertension

March 20th, 2013 by DCPatient 3 comments »

I have to admit, I was like Ralphie in the movie A Christmas Story, when he finally received his Little Orphan Annie decoder ring in the mail after a long wait and much anticipation, only to find out that the secret message was to “Drink your Ovaltine”.

Such was my let down when after finding out, only through passing comments by one of the physicians I am friends with at the hospital where I receive most of my care, that there was indeed a patient portal at the institution [Comment 1: if you have a patient portal please tell patients about it] and finally receiving a PIN number to gain entry, and working with the helpline to find out that I must enter my name in ALL CAPS because that is how it is in my patient record at the hospital [Comment 2: random case sensitivity not mentioned in the instructions, unnecessary barrier to use] I  accessed my patient portal to find – NOTHING!

Ok, almost nothing.  After being a patient at this institution for 6 years, seeing primary care, GI, transplant, having multiple labs, procedures, imaging, and being an inpatient there was the following information available to me:

  • Four (4!) values under general health – 1 blood pressure reading from December 2012 and 3 lipid values from June 2008
  • My medications list
  • My immunizations

That’s it!  Hello, where’s my data?  [Comment 3: The whole point of a patient portal is to have access to all the information about me (including the notes, see OpenNotes project ) in the EMR of the hospital and associated practices.] That not just my hope or opinion. When I finally got my hands on a marketing brochure for the portal they describe themselves as, “your direct link, via your personal computer, to the electronic health record your doctor creates and maintains for you.” It further states that, “Your entire paper patient record file is now stored digitally in a safe, secure environment.” If my doctors only have 4 values, a list of medications, and immunization records upon which to make clinical decisions about me then I am in big trouble.

As for other features – request an appointment and request a referral are really just secure emails that the fine print mentions may take 2-3 days to be returned.  I might as well just call. Actual appointment scheduling, alerts to upcoming appointments and allowing me to fill out the forms in advance of the appointment would be worth my time and very helpful to both patient and provider efficiency.  The renew prescription feature is limited, certainly nothing to make me give up the auto-refill and auto-renew offerings from CVS/Caremark’s website.

The final indignity is the request test results feature – JUST SEND THEM!  Why should I have to specifically recall and request each lab, procedure, and test result?  Also, I couldn’t even if I wanted to because only one of my doctors is listed.  Indeed, Meaningful Use objectives include providing patients with timely electronic access to health information within 4 business days of that information being available to the provider. Start with uploading the clinical summaries if that’s all you can handle right now, but 4 values over 6 years of data is inexcusable.

The Frequently Asked Questions section (my real questions are truly just WTF and why did you bother?) explains that this portal is not intended to be a PHR. The option is given to upload this information into my Microsoft HealthVault account.  Not much use if there is nothing to upload.

The FAQs also say, “no”, literally, to being able to view, share, or help manage your family members’ records. [Comment 4: Access by parents, children of seniors, or other caregivers is one of the top reasons that people would derive value in using a patient portal]  The marketing materials, however, state that, “you may choose to share your lab results and other information with a family member you want to help manage your care.” You just can’t do it here.  Well you can if you give your caregiver your ID and password, but they don’t mention that.

The rest of the site is health education and risk assessment tools and information on the various hospitals in the system. [Comment 5:  Risk assessment tools are more useful if you populate the risk factors from my record and I would be more willing to look through your propaganda if you had met my needs first].

In sum, I have seldom in my life experienced such great disappointment. This portal is more like Sarah Palin’s Bridge to Nowhere.  I know the technology, the policies, and the incentives exist to create and operate a useful patient portal. My institution just chose not to.  This says to me that activating, engaging, or empowering me is not important to them.  Fortunately, I am activated, engaged, and empowered enough to go elsewhere.

Next-Generation Non-Profits: Liver Edition

November 6th, 2012 by DCPatient No comments »


I cannot believe that it has been months since I posted.  It has been a whirlwind since July 30th when I started as President & CEO of the American Liver Foundation.  I have traveled almost 15,000 miles learning and listening to staff and volunteers in our 16 chapters around the country so that I can do the best job possible on behalf of the 30 million people in the U.S. ( like me) affected by liver disease.  During one of those trips I also had the privilege of doing an Ignite presentation at the Stanford Medicine X Conference as an e-patient scholar.  Thank you, Stanford Medicine X planners, for inviting and integrating 35 e-patients rather than the customary 1 or 2 at most meetings.

Top of mind for me was and is, what does a Next-Generation Non-Profit look like?  How do you create one?  How do you transform a last-generation traditional non-profit into one?  Thank you to Sarah Krug, Executive Director of Cancer 101 and President of the Society for Participatory Medicine for sparking many of these discussions.

Since this was a tech-y, design type crowd I kept my slides to a single number and spoke from there. Next Generation Non-Profits in Numbers_cryer

Here are my numbers decoded.

10, 792 = Days since my initial diagnosis with ulcerative colitis. 10, 792 days ago I became a patient.

18 = years since my liver transplant.   I consider myself blessed to receive this gift of life.

16,036 = number of people on the waiting list for liver transplants.  Only about 6,000 people receive transplants each year.

100 = types of liver disease. Babies are born with genetic/metabolic disorders, teenagers can develop autoimmune conditions, the CDC recommends every Baby Boomer be tested for Hepatitis C

25,000,000 = people living with at least one chronic condition.  This is not a liver-specific quandry.

11, 473 = Twitter followers of @epatientDave ( on that date) — one  measure of online patient advocacy.   Note the large gap between the number of patients and the number of epatients.  I see opportunity there.

42 = Patient advocacy groups that meet the standards of the National Health Council, the umbrella group for traditional nonprofit organizations from the American Heart Association and the American Cancer Society, and a leader in policy around chronic disease and medical research

5 = minutes, less now, to make the argument that uniting the energy of epatients with the structure and reach of the traditional patient advocacy organization we can do a better job of creating patient-defined and patient-driven change in healthcare

36= The American Liver Foundation, my organization, is 36 years old. The oldest and largest patient advocacy organization in the liver space.

1 = I am the first patient to be CEO of the Foundation and one of the only patients to lead a major patient advocacy organization (Take a moment. Think about it.)

2= questions comprise the new strategic filter for everything we do as the Foundation — (1) does it solve a problem for a patient or a patient family?  (2) are we solving the problem in the most innovative and effective way possible?

20 = number of Board members I needed to convince that these were the right questions to be asking, the right direction to go in.  And just to explode any misconceptions that next-generation non-profits is about age, or even the sole province of patients, my biggest supporter has been practicing medicine as literally as long as I have been alive.  Next-generation non-profits are about impact.

8 = active partnerships between the Foundation and other associations

14 = pilots pending with academic medical institutions

3 = satellite sites for the patient-centered advocacy forum we held to get insights directly from patients to form the basis of our policy agenda

4 = government or quasi-governmental agencies ( pop quiz — name them in the comment section!) with new (past 2-3 years) patient/stakeholder engagement positions that we invited to the forum to interact with our patients

82 = corporate partnerships being pursued across sectors from food (fatty liver disease) to medical imaging to pharmaceutical

16 = chapters around the country, because at the end of the day it is about meeting individual needs, often face to face, or based on the specifics of the community

10, 792 = days from now I hope that there is no American Liver Foundation because we would have been so successful in eliminating liver disease.  My vision is that next-generation nonprofits are not about their own self-perpetuation, but about meeting their mission. I hope that 10, 792 days from now no one else’s little girl becomes a patient.



We Are All Doctors

July 21st, 2012 by DCPatient 15 comments »

Well of course we are not all doctors.  What a ludicrous statement.  Just because I have changed a band-aid, taken a temperature, “diagnosed” a headache and appropriately treated with an acetaminophen, and even clipped an in-grown toe-nail does not make me a healthcare professional.  I do not have the education, training, and experience that would entitle me to be called a doctor, nor would I be able to provide the insights and informed perspective of a doctor.

Yet, in meeting after meeting lately I hear the statement “We are all patients” made to justify people who have not lived with a chronic illness, not been hospitalized, not experienced the fear, confusion, frustration and urgency born from navigating and confronting a serious disease, shaping policy and health system change on behalf of patients.  I believe that this is as ludicrous and dangerous as my attempting to channel the physician perspective without having lived the physician or healthcare professional experience.

I would like to see how far we would get if we tried to put together a panel on “The Physician Perspective on Health Care Reform” with only patients and patient advocates, shrug that we could not find a doctor to speak (They are too busy after all, and we wouldn’t want to put any more burdens on them), or that it was too hard to choose among just one specialty, but excuse our omission because the panelists chosen know doctors, have spoken with them, maybe even did a focus group with doctors so feel perfectly qualified to speak on their behalf.  That clearly would not be tolerated.  So why are we content to go through the charade of  discussing or designing healthcare without including the people most affected by healthcare and with the most knowledge about and incentive to fix the gaps, needs, and impact of healthcare challenges and failures?

I understand the well-meaning attempt to broaden the group of people focused on healthcare issues motivating many who wave the “we are all patients” flag, but there is a difference between having an interest or future stake in a high-quality healthcare system and having the experience that qualifies you to play a meaningful role in shaping that system.  Patients who have earned that experience the hard way should not be devalued or disrespected by lumping them in with everyone who has had an annual physical in the same way a leading neurologist’s expertise would never be compared to someone who watched a documentary on the brain.

Launch of American Liver Foundation Innovation Council Today

June 8th, 2012 by DCPatient No comments »

Good morning, Chicago!  Looks like a great day to start something new.

Today is the launch of the American Liver Foundation’s Innovation Council.  (@ALF_USA) Chaired by Dr. Danny Sands (@Dzsands) (@S4PM), Director of Healthcare Business Transformation at Cisco, and Dr. Nancy Reau, Assistant Professor of Medicine at the University of Chicago, the ALF Innovation Council is intended to bring together creative minds from across silos in healthcare to help us solve key problems facing liver disease patients and their families.

The program will also feature a panel of patients discussing their various experiences with liver disease and a presentation of the state of liver disease and treatment today.

If you are reading this blog post, it is likely that you have been unable to join us in person, but we’d still love your input.

Please comment on the four questions below or tweet us this afternoon (we start at 1pm CT) using the hashtag #ALF_IC.    Many thanks to the Innovator companies who are helping to spark our imaginations.

Step One: Detection/Diagnosis : Moderator Nancy Reau, MD

Key Issue/Question: How can we expand the number of patients in rural and underserved communities accurately diagnosed with liver disease?

Innovation Example: OraSure Rapid Test (rapid diagnostic test for HIV and HCV) @OraSureTech


Step Two: Newly Diagnosed/Treatment Selection: Moderator Danny Sands, MD

Key Issue/Question: How can we accelerate the understanding of a patient and their family of their diagnosed condition and how they are going to navigate an increasingly complex set of options?

Innovation Example: Inquisit Health (peer-to-peer web platform) @InquisitHealth


Step Three: In-Treatment: Moderator John Kontor, MD

Key Issue/Question: How can we optimize therapies by helping patients overcome barriers to adherence?

Innovation Example: Ginger io (smartphone/SMS/adherence and behavior feedback program)


Step Four: Survivorship: Donna Cryer, JD @DCpatient

Key Issue/Question: What are the best long term outcomes for liver patients and how do we achieve them?

Innovation Example: Galileo Analytics (data mining and visualization tool)



Liver Disease Word Cloud

June 3rd, 2012 by DCPatient No comments »

Wordle: Liver Disease


Learn more:  American Liver Foundation


The TEDMED Effect

April 13th, 2012 by DCPatient 2 comments »

Since TEDMED, which ended  a little more than 3 hours ago, was a fantastic mix of the silly and the sublime, it would not be inappropriate to start with a song lyric quote from Milli Vanilli “Girl ( and Guy) you know it’s true”.  TEDMED is everything you’ve heard and more.  The event (conference is too limiting a term) brought a blast of California cool to the shores of the Potomac here in Washington, DC.
Presentations ranged from acrobats to violin-playing neurobiologists, from talks on cutting-edge biosensors and genetic manipulation to the common sense concept that food is medicine, but the true magic in TEDMED was the carefully “curated” group of attendee/participants.  100% of the people I met were electrically smart, engaging, generous and innovative.  Although the participants (attendees is truly too passive a term) ranged from CEOs of large health systems to celebrity surfers, everyone demonstrated an attitude of genuine interest in discovering what the next person was doing or thinking.
With such a purposefully eclectic set of intellectual and emotional stimuli, I needed to stop and ask myself what I would take away and apply to my life and business.  What would be the long-lasting TEDMED effect on my life and perhaps more importantly what would my TEDMED Effect be? How would I be more innovative, imaginative, and inspiring (the TEDMED principles) after having participated?
1.    I will continue to persevere despite the challenges inherent with transforming something as complex as healthcare, thinking back to tennis and feminist icon, Billie Jean King’s statement that “pressure is a privilege”.
2.    I will collaborate with others to brainstorm how to connect high-level advances in technology to traditionally medically underserved communities so that no one misses out on the promise and potential of health innovation.  As Leslie Saxon, a cardiologist at the USC Center for Body Computing, said, “access to your health data is the new civil rights issue”.
3.     I will strive to live more in harmony with myself, my microbiome, and the earth as “health is a form of non-violence against yourself” to quote Mark Hyman from the Institute for Functional Medicine. Such a transformational thought for patients like myself with autoimmune conditions.

4. I will never again underestimate the power of design to foster and energize flow, communication, and collaboration.  The Social Hub as exhibit hall reimagined and brought to life was a game changer for all of us who ever dared entertain the question, ” how do you make problem-solving fun?”, or as the Surgeon General Regina Benjamin observed, thought that  “healthcare can be joyful”.
Whether you attended in person, watched via the 2000 simulcast sites, or are now excited to attend next year, I’d love to know, “What is your TEDMED effect?”.  Please comment below and let me know.

PCORI National Patient and Stakeholder Dialogue

February 27th, 2012 by DCPatient 3 comments »

Today the Patient Centered Outcomes Research Institute held a National Patient and Stakeholder Dialogue at the National Press Club. #pcoridialogue

The purpose of this meeting was to facilitate discussion and hear public comment on the draft National Priorities and Research Agenda.   This continues the laudable pattern of public and patient engagement that has distinguished PCORI under Executive Director, Joe Selby, the perfect Beltway outsider (IMHO) for this non-traditional entity charged with doing things differently.  I loved that COO, Anne Beal was live tweeting from the meeting and reviewing comments in real time. @anne_beal   @acbeal

The new Director and Deputy Director for Patient Engagement, Judith Glanz and Sue Sheridan were also introduced.

The agenda included  two panels  — the first featuring representatives of patient and caregiver advocacy organizations and the second clinician and business representatives – followed by 3 ½ hours of public comment.

One early observation was that there was no patient panel.  A distinction between consumers/public, patients, and patient advocacy organizations was made several times and hopefully will be better reflected in future meetings.  While I understand the concerns with selecting patient speakers for a panel, rather than comment – how do you select a few to represent many?  How do you ensure that patients stick to the rules of engagement for the meeting and provide remarks that are appropriate and productive? – if PCORI which is specifically tasked with engaging patients at every level won’t make the effort to construct a patients’ panel how can we expect any other meeting organizer.  @trishatorrey wrote a great recent blog post borne of her frustrations with this issue.

Among emerging resources to help identified qualified patient speakers is Speaker Link

My key takeaways from the event:

  1. PCORI should be given a great deal of credit in how proactive they are in soliciting patient input, but there is much work to be done in changing the culture of policymaking entities, physicians, researchers and other stakeholders to accept a fully participatory role for patients.
  2. PCORI Board of Governors member Dr. Harlan Krumholz @hmkyale is a passionate speaker on defining authentic patient-centeredness.  He belongs in that rare circle of physicians @tedeytan and @drdannysands  who are capable of playing that essential role of bridging the patient and physicians worlds to catalyze patient-centric change.
  3. There were a number of speakers from trade associations and established interests that criticized PCORI for moving too fast, for iterating documents in parallel, rather than in sequence, and for not specifying (at this stage) the disease states or conditions that will be researched as part of this agenda.    I find this criticism disingenuous, coming from the organizations staffed and most capable of evaluating and commenting quickly.  A cynicism from two decades in Washington leads me to think that the real issue is that there was no one point to lobby for or against in the current construct.  Individual grants from diverse researchers and research communities will bypass the traditional trade association gate.  I think that the current emphasis on mechanisms of patient engagement and high level description of five areas that cross disease states is appropriate given the work that needs to be done in establishing this field and approach to patient engagement in healthcare and healthcare research.
  4. My comments to the agenda include:
    1.  Education (see my post on Research Literacy  should be a precursor to the communication and dissemination of comparative effectiveness research
    2. As PCORI does move into more specific disease states that emphasis be given to research on decision support for patients with complex conditions, comorbidities, rare diseases, and stigma that are currently underrepresented in research and where there are huge gaps in knowledge
    3. Definition of treatment include post-intervention management and issues related to survivorship.

Comments on the agenda are open until March 15, 2012.  Make your voice heard.

I look forward to working with PCORI and the new patient engagement staff to advance the mission of patient-centric ( dare we hope for patient-driven) comparative effectiveness research.

Supporting Patient Engagement

January 23rd, 2012 by DCPatient No comments »

As the patient engagement “movement” grows, there are many health care practitioners and health systems who want to interact differently with patients – whether to improve patient satisfaction scores, obtain pay for performance incentives, meet standards for Patient-Centered Medical Homes or Accountable Care Organizations, or from a heartfelt desire to collaborate to improve outcomes as defined by patients.

The question most ask is “how?”.  “What does patient engagement look like in practice?  What does it look like in my practice?  What specifically do I do?”

Here are some examples (Hospital edition):

At the Institution Level —

  • Hire and empower a Patient Ombudsman to elicit and respond to patient and family questions and concerns
  • Get the administrators out of the office sometimes and take them on Executive Team Rounding to actually meet patients
  • Conduct Patient/Family Surveys and Patient/Family Focus Groups and analyze, display, and use the data
  • Convene Patient/Family Advisory Boards
  • Appoint Patients and Patient family Members on  your Governing Board

At the Health Care Practitioner Level

  • Understand and assess your patients to ascertain their differences in preferences and capacity for engagement (Read Dr. Jerome Groopman’s  and Dr. Pamela Hartzband’s Your Medical Mind)
  • Give your patients and their families permission to partner with you. Voice your willingness to be answer questions, explain things more fully.
  • Ask permission to connect with patients. (It demonstrates respect)
  • Don’t swoop. As workflow permits, time your visits to patients when they are awake and family is present. (At 5:30 am after a restless night in the hospital most patients are not at their most cogent and inquisitive.)
  • Share information.Share with your colleagues to enhance coordination and share with patients to help them ask the right questions and make the right decisions (for them).
  • Start preparing patients for post-discharge self-management as early as possible

Thank you for your support

Research Literacy and the Democratization of Data

January 17th, 2012 by DCPatient 3 comments »

In last week’s post, New Year’s Resolutions for E-patients, I used the term research literacy.  Go ahead. Google it. “research literacy”  I’ll wait.

What did you find?  Nothing. Exactly. Your heard it here first folks. A new concept for a new year.

As a long-time Star Trek Fan (Original, Next Generation, Deep Space Nine, even-numbered movies) I had believed that space was the final frontier.  In patient engagement, however, I have come to believe that in fact the final frontier is research.

From Patients Like Me impromptu lithium studies to reviewing grants for the Patient Centered Outcomes Research Institute (PCORI), patients are acting on pent-up desires to engage in research as other than mere subjects.

Although there is greater acceptance by physician, health system, and academic communities that patient engagement is desirable and likely to improve outcomes on an individual and population health basis, there still exists skepticism to the point of incredulousness that patients could, let alone, should, have a role in research other than as subjects.

Patient engagement for a large segment of the healthcare system equates to compliance, or if they are being politically correct, adherence.  Engagement, to them, means participation to the degree that we are able to do what the doctor has told us to do correctly.  However, just as children do not stop growing at that adorable toddler phase, patients are maturing as well in the types of questions we ask and the roles we would assume.

One of those roles for many patients, particularly those with chronic and/or rare diseases, is the development of research questions, queries about analysis and applicability of existing data or recommendations for studies that answer questions based on their own experiences and areas of emphasis.

There are numerous instances of patients or parents/caregivers starting foundations or companies for that matter to jumpstart the discovery and development of cures or even advocacy organizations like Faster Cures which has a robust track record of innovation and collaboration, but aside from the work of a limited number of advocacy organizations confined primarily to specific disease states, (Advocate Institute), no one teaches the average patient how research is conducted or provides an opportunity to become a researcher.

A great deal of the resistance by the research community to patient engagement in this arena is the inability of most patients to “speak the language”.  Just as in Stage 1 of Meaningful Use patients were dismissed when they weren’t able to answer questions such as “Are you in favor of meta-tagging of data?”, patients without backgrounds in biostatistics, study design, and epidemiology are considered to have nothing to offer to the field.

Learning the lessons of Stage 1 Meaningful Use of Health Information Technology, which has progressed to a burgeoning consumer engagement phase and active mhealth community, I propose a two-fold solution:

(1) Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information.  (If that sounds daunting or unreasonable, figure that if nothing else, the ability to differentiate absolute from relative risk will stand you in good stead every time you read the morning paper and see a screaming headline that states drinking coffee increases your risk of death 800%)

(2) Researchers need to develop the right questions to facilitate the translation by patients of their experience into research terms and frameworks.  Just as “Are you in favor of meta-tagging of data?” evolved into “What do you want an electronic medical record to do?”, the clinical research community would benefit (in better targeted studies, faster recruitment, better retention, and increased adoption of interventions) from meeting patients where they are.

PCORI is charged specifically with identifying and developing mechanisms for patient engagement in comparative effectiveness research.  It is potentially transformational in defining research in a manner that is “informed by the perspectives, interests and values of patients throughout the research process, from the selection of research questions to the dissemination of research results.”  It is my hope that PCORI and others begin providing patients with the training and tools to make high-quality contributions to research and motivation to physicians to set another chair at the table.