Making Patients Heard ™
Research Foundation

The patient experience is central to clinical care and research. Making Patients Heard™ Research Foundation (MPH) strives to empower and enable patients to describe their feelings and experiences about their illness, functioning, disease, health, and well-being in an online research environment that protects the identity and confidentiality of consenting participants.

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About Us

  • Incorporated as a charitable foundation in Delaware and granted IRS 501c3 tax-exempt status in September 2022
  • Eager to Partner with like-minded organizations that value and enable patients to participate in research aimed at improving their health and care.
  • The Foundation reaches out to patients who are in research by contributing information about what they feel and experience.
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Leadership​

Led by accomplished researchers, clinicians, and experience experts who work at the cross sections of academia, government, industry and non-profit settings.

Chair​

Ira Shoulson MD​

Ira Shoulson, MD is a neurologist, internist, clinical trialist, and currently Professor of Neurology.

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Co-chair​​

Karl Kieburtz MD​

Karl Kieburtz MD MPH is a neurologist and clinical researcher, and is currently Professor of Neurology.

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Secretary​

Daniel Kinel JD​

Dan Kinel is a lawyer by training and profession. Since being diagnosed with Parkinson’s Disease in 2013.
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Treasurer

Tracia (Trae) Luh MBA

Bill and Melinda Gates Foundation

Chief Financial Officer, Global Health; Business Development & Licensing Lead

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Member at large

Warren Olanow MD

C. Warren Olanow has been Chief Executive Officer of Clintrex since its founding in 2008.

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Member at large

Mike Poole MD

Mike Poole has focused his career on the development of therapeutics for diseases

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Chief Medical Officer

Karen Anderson

Karen Anderson, MD is a clinical researcher, center director, and is currently Professor of Psychiatry & Neurology.
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Director of Clinical Research

Cindy Casaceli MBA

Ms. Casaceli is a Research Associate Professor at the University of Rochester Center for Health + Technology

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Administrator

Jeanne Paiko-Freitag MS, CMP

Jeanne Paiko-Freitag works is a Development and Event Manager in the Center for Health + Technology at the University of Rochester.

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Assistant to Director of Clinical Research

Debbie Baker

Ms. Baker has worked at the University of Rochester’s academic CRO for over 35 years.

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Mission

The Mission of the Making Patients Heard Research Foundation is to improve clinical care and research. We will do so by empowering and enabling patients to characterize and convey their feelings and experiences, including what they say and do, about their illness, functioning, disease, health, and well-being. 

 This directly reported knowledge will inform the clinical meaningfulness and value of care and treatments for a broad community of stakeholders ̶ Patients, Families, Clinicians, Researchers, Disease-Focused Organizations, Health Care Systems, Industry, Regulators, Insurers, and Government ̶ who will endorse our fundamental commitments.

Fundamental Commitments

Listening to what patients say—in their own words—about how their illness affects them

Ensuring patients own the individual data that each submits, and protecting their privacy

Returning learnings—derived from their data—to patients, and placing those interpretations in the context of a collective data environment

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What we are learning...

What Problems Bother Patients with Parkinson’s Disease

There have been few comprehensive surveys of the features of the illness bothering Parkinson’s disease (PD) patients, and none have assessed PD patient reports in their own words.

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View Points

Ira Shoulson MD​

My take

From Patient History to Better Health and Outcomes

The ‘history’ ‒ what patients tell clinicians about what ails them ‒ is the cornerstone of the patient-physician relationship. Yet, patients only get an average of 20 uninterrupted seconds to share their story about the problems that bother them and the impact of their symptoms on functioning. Patients rarely have an opportunity to talk about their personal well-being.

Physicians are indeed busy. The current healthcare system limits the time that doctors and patients spend together. It is unlikely that physicians will be freed up soon to devote more time to patients. The ‘history’ or patient narrative is further limited by the different languages that patients and clinicians speak ‒ lay versus medical.

There is also a conspicuous imbalance of information and information flow between physicians and patients. What if patients could begin to close the information gap and redirect information flow? What if patients became better informed and more effective narrators of their health? Online health portals provide an important window to patients about their health information. But portals are typically one-way, designed for patients to gain information that is stored in their medical records. What if patients could use online platforms to become better narrators of their health problems and personal well-being?

How can patients share their feelings and experiences about their health beyond the 20-second window of uninterrupted history? The Making Patients Heard (MPH) Research Foundation was established in 2022 to empower patients to be better informed about their health and become better ‘historians’ or narrators about the problems that bother them and the impact of their symptoms on their functioning.

The MPH experience will be enabled by opportunities for online research participation that focus on what patients say in their own words and what patients do in the form of video measures of speech, movement, and function. Participants will own their own data and direct sharing of their de-identified data with scientists in a research environment that protects data security and participant privacy.

Making Patients Heard is building and testing an online research platform that will offer patients the opportunity to share their problems in their own words and in the priority that they set. Consenting research participants will also complete selected categorical scales such as measures of independence and change over time as well as providing video capture of speech, movement, and function.  Devices that have an internet connection and camera, such as a smartphone, tablet, or computer, can be used to join the platform. Participants will also have access to an online dashboard that provides them with research results after periodic study visits, including their problem lists, healthy living guidances, and information about participating in clinical trials. The first study will focus on patients diagnosed with Parkinson’s disease and is planned to launch summer 2023.

From birth through our life journeys, we are all patients. We can look to MPH to be heard. Please visit the MPH website for updates, and consider participation in our research opportunities and donating to Making Patients Heard ‒ a non-profit, 501(c)3 tax-deductible charitable foundation.

Ira Shoulson MD, Chair Board of Directors

Making Patients Heard Research Foundation (MPH)

April 2023

Karl Kieburtz MD​

My take

I have been intrigued that we rely on individual participant verbatim reports of problems encountered in trials (ie adverse event reporting) as the backbone of safety assessments, but we do not similarly record (or value) their reports of benefits. Research has systematically failed to record participants’ problems with their illnesses, as well as their perceived benefits from interventions. Much like we have codified the myriad of ways individuals report adversity, we have the ability to capture, analyze and report their individual experiences of illness and the results of treatment. The Foundation is committed to capturing those experiences, organizing them for analysis, and returning insights based on those reports to the individuals who provided them.

Cindy Casaceli MBA

My take

Content

MPH-PD

More information coming soon

Interested in learning more? Let's stay in Touch

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More About Us

What patients say in their own words will be de-identified and collected periodically in longitudinal observational studies to create a patient-reported natural history of illness, functioning, health, well-being, and quality of life.  

Research participants may also choose to access learnings from their data for personal use and to participate in additional research including clinical trials. 

Listening to what patients say, in their own words, about how their illness affects them.

Ensuring patients own the individual data that each submit, and to unwaveringly protect their privacy.

Returning learnings, derived from their data, to patients, and placing those interpretations in the context of a collective data environment.

Ira Shoulson MD

Ira Shoulson, MD, trained in neurology, internal medicine, and experimental therapeutics, is currently professor of neurology at the University of Rochester and Georgetown University (adjunct), and chief medical officer at Modality.ai. 

In 2017, he founded Grey Matter Technologies, a company focused on interpreting what patients feel and experience in their own words using natural language processing and supervised machine learning. In June 2022, Grey Matter Technologies was acquired as a wholly owned subsidiary of Modality.ai where he now serves as chief medical officer.

Dr Shoulson’s passion for Making Patients Heard originated from his medical training at the University of Rochester and the National Institutes of Health (NIH), that in turn inspired his founding of the Parkinson Study Group (www.parkinson-strudy-group.org) and Huntington Study Group (www.huntington-study-group.org)  ̶̶  international academic consortia devoted to research and development of treatments for Parkinson and  Huntington diseases.  He has led more than 50 clinical research studies and played an instrumental role in the development of 10 new drugs for neurological disorders, including for Parkinson disease (selegiline, lazabemide, pramipexole, entacapone, clozapine, rasagiline, rotigitine), Huntington disease (tetrabenazine, dutetetrabenazine), and attention deficit disorder (Concerta). 

Dr. Shoulson is an elected member of the National Academy of Medicine of the National Academy of Sciences and was the recipient of the Michael J. Fox Foundation Pritzker Prize in recognition of his leadership in research and education for Parkinson disease. In September 2022, Dr Shoulson founded and now chairs the Making Patients Heard Research Foundation (MPH), a non-profit charitable organization with a mission to empower patients to be better narrators of their health, improve tools for online research and care, and develop clinicallymeaningful treatments.

Karl Kieburtz MD, Co-chair

Karl Kieburtz MD MPH is a neurologist and clinical researcher, and is currently Professor of Neurology, at the University of Rochester. He serves on the Steering Committee for the PPMI program sponsored by the Michael J Fox Foundation, and a Project Co-Director in the NINDS- funded Udall Center for Parkinson Disease at Rochester. He was elected as a Fellow in the American Association for the Advancement of Sciences in 2014. He co-founded Clintrex in 2008, providing scientific and regulatory advisory services to companies developing CNS therapies, and continues to serve as President. He serves on the scientific advisory boards of biotech and pharma companies, as well as for emerging data technology companies.

Daniel Kinel JD, Secretary

Dan Kinel is a lawyer by training and profession. Since being diagnosed with Parkinson’s Disease in 2013, he has also become deeply involved both in patient advocacy and Parkinson’s Disease research.  Over the course of his almost three decades as a corporate and securities lawyer, he represented numerous companies, from start-ups to NYSE-listed public companies, in corporate governance, corporate finance, securities compliance and other business law matters.

 

Tracia (Trae) Luh MBA, Treasurer

Bill and Melinda Gates Foundation,

Chief Financial Officer, Global Health; Business Development & Licensing Lead

Tracia Luh leads a team that provides financial and strategic planning and analytical support across the Gates Foundation work in global health. She also leads the Gates Foundation Business Development & Licensing team, which structures investments with private-sector business partners to advance the Gates Foundation mission and charitable purpose.

Tracia joined the Gates Foundation in 2016 as chief financial officer of the U.S. Program, which largely focuses on education. Earlier, she served as CFO of Andela, a talent accelerator funded by the Chan Zuckerberg Initiative and other investors that trains software developers in Africa and places them with leading global companies. She also served as CFO and senior vice president of corporate development at Newsweek, a division of Graham Holdings / Washington Post, where she was hired to lead a financial review of strategic alternatives that culminated in the sale of the division. From 2000 to 2009, Tracia held senior financial positions at ESPN/Disney, assessing operating performance and evaluating strategic transactions and investments. She began her career in the Global Fixed Income departments at Merrill Lynch and Chase / J.P. Morgan, analyzing companies and publishing investment recommendations.

Tracia has a bachelor’s degree from the Wharton School at the University of Pennsylvania and an MBA from the Kellogg School of Management at Northwestern University. She serves on the boards of the YMCA of Greater Seattle, which manages 13 Seattle-area branches, and Lincoln Center Education, which provides arts education programs to underserved schools and communities.

Warren Olanow

C. Warren Olanow has been Chief Executive Officer of Clintrex since its founding in 2008. He is the former Henry P. and Georgette Goldschmidt Professor and Chairman of the Department of Neurology, at the Mount Sinai School of Medicine in New York City, and currently serves as Professor Emeritus in the Department of Neurology and in the Department of Neuroscience at this institution. His research has focused on the cause and treatment of PD and other neurodegenerative diseases. He has led multiple pivotal clinical trials and interacted with regulatory agencies leading to the approval of Pergolide, DBS for tremor, DBS for PD, Safinamide, levodopa/carbididopa intestinal gel, and the apomorphine sublingual strip.

Mike Poole

Mike Poole has focused his career on the development of therapeutics for diseases of the nervous system and has more than 30 years experience leading physician and scientist teams in industrial and philanthropic organizations. Mike currently serves as an advisor and board member for several biotechnology companies and is an advisor for Alzheimer’s disease investments for Gates Ventures.

Mike previously served as a venture partner for Biomatics Capital, where he focused on identifying and evaluating investments in data- and genomics-enabled approaches for neuroscience and supported portfolio companies with transitional and operational leadership. Mike also led external investments in the office of the President for Global Health at the Bill and Melinda Gates Foundation. Prior to joining the Gates Foundation, he served as vice president and head of the Neuroscience Innovative Medicines group at AstraZeneca. Mike also served as chief medical officer for Link Medicine and Hypnion, and was vice president of neuroscience development at Wyeth and Pfizer.
Mike is board certified in internal medicine, having trained at Strong Memorial Hospital at the University of Rochester. He also is board-certified in adult neurology, completing his postgraduate training in neurology at the University of Michigan. Mike holds an undergraduate degree from the University of California, Berkeley and an M.D. from the UC San Diego School of Medicine.

Karen Anderson

Karen E. Anderson, MD, is a tenured Professor of Psychiatry & Neurology at Georgetown University. She was recruited to Georgetown in 2013 to direct the Huntington Disease Care, Education and Research Center (HD-CERC) at Georgetown MedStar Hospital. The HD-CERC is a Huntington’s Disease Society of American Center of Excellence. Dr. Anderson’s clinical and research interests include treatment of behavioral symptoms in patients with Huntington Disease (HD), and other movement disorders such as Parkinson’s disease. She had a lead role in development of expert consensus treatment guidelines for emotional symptoms in people with HD. She conducts clinical trials for new drug therapies in dementia and movement disorders, and has had a leadership role in several HD clinical trials and for a treatment for tardive dyskinesia. Her work includes using patient reported outcomes in neurological disease to better understand how people with an illness prioritize symptoms and their impact. She is currently the Principal Investigator for myHDstory, a Huntington Study Group virtual research platform for people impacted by Huntington Disease.

Dr. Anderson earned her undergraduate and medical degrees from the University of Chicago. She completed her internship at Columbia Presbyterian Medical Center and her residency and postdoctoral research training in psychiatry at Columbia University and the New York State Psychiatric Institute. She has subspecialty certification in Neuropsychiatry and Behavioral Neurology. Prior to her recruitment to Georgetown, Dr. Anderson was the Director of the University of Maryland Huntington’s Disease Clinic, which she founded in 2001, and a clinician at the Baltimore VA Medical Center in the Operation Enduring Freedom/Operation Iraqi Freedom Traumatic Brain Injury Clinic.

Cindy Casaceli

Ms. Casaceli is a Research Associate Professor at the University of Rochester Center for Health + Technology. Ms. Casaceli holds an MBA from the Simon School of Business with concentrations in Computer Science and Accounting. Cindy’s undergraduate work was in Biochemistry with a concentration in Computer Science.

Over the past 25 years Ms. Casaceli has participated in the conduct of Neurologic research in Parkinsons Disease, Hunington’s Disease, Freidrich’s Ataxia and Alzheimers Disease. Ms. Casaceli has held positions including the Clinical Trials Coordination Center (CTCC) Director, CTCC Director of Data Management and the Interim Director of the Center for Health + Technology. She is a subject matter expert in the operational conduct of multicenter clinical trials and has 3 drug approvals.

Jeanne Paiko-Freitag

Jeanne Paiko-Freitag works as a Development and Event Manager in the Center for Health + Technology at the University of Rochester. Ms. Paiko-Freitag has over 20 years in administration, meeting and events, with over half of her time has been working in the area of study specific and clinical trial meetings and Annual meetings for the Parkinson Study Group. She has her Masters of Science and is a Certified Meeting Professional.

Debbie Baker

Ms. Baker has worked at the University of Rochester’s academic CRO for over 35 years. Ms. Baker is highly skilled and experienced project manager and administrator.

What Problems Bother Patients with Parkinson’s Disease

There have been few comprehensive surveys of the features of the illness bothering Parkinson’s disease (PD) patients, and none have assessed PD patient reports in their own words. 

The Making Patients Heard Research Foundation (MPH) has assembled a profile of what bothers PD patients using an extraordinary collection that includes more than 25,000 individuals who reported they had been diagnosed with PD. The data were obtained from the Fox Insight online research study https://foxinsight.michaeljfox.org and its associated shared database FoxDen https://www.michaeljfox.org/fox-den – both sponsored by the Michael J Fox Foundation for Parkinson’s Research. The data (source PD-PROP Feb 2020) were analyzed in collaboration with scientists at Grey Matter Technologies/Modality.ai, and an expert research team including PD clinical specialists, persons living with PD, data scientists, and statisticians.

Research participants included 23,164 English-speaking adults (55% men, 45% women) who were asked to report in their own words the problems that bother them due to their PD and how these problems affect their daily functioning. They could report up to five problems and order them starting with the most bothersome. Their online reporting by keyboard entry at study enrollment produced 51,198 verbatim narratives for the most bothersome problem. The verbatim reports were analyzed using natural language processing and human-in-the-loop curation to classify the verbatim text into 14 clinically meaningful domains or topics.

Eight domains were related to the movement disorder of PD (62% reports), and six domains were non-motor (38% reports) representing problems classified as psychological (mood and emotional disorders), pain, cognition, fatigue, sleep, and the autonomic nervous system controlling blood pressure, and gastrointestinal and urinary functions. Most problems in the motor domain were related to tremor, reduced dexterity, handwriting size, and impaired gait and balance.

Further analyses of this dataset will address the 65 individual symptoms that comprise the motor and non-motor domains, as well as the relationships of these symptoms to key factors such as age and duration of PD. The learnings from these analyses will be shared as MPH prepares to launch an innovative online research study designed to follow over time what bothers PD patients, and the impact of these problems on their daily functioning.  Additional research technologies will be employed to guide participants and record movement, voice, and other markers of PD. Please stay tuned to this MPH space.