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Newsletter #1

January 2014

Introduction to
the Patient Innovation Project

Welcome to the inaugural Patient Innovation newsletter!
As we welcome 2014, we are excited to have the launch of the Patient Innovation platform and social network just around the corner. For those who don't know, Patient Innovation is a nonprofit, international, multilingual platform and social network where solutions developed by patients or caregivers can be shared and improved in a collaborative way.

The project is the result of our research in the area of user innovation, in collaboration with Prof. Eric von Hippel from MIT. We observed that patients of chronic diseases often develop innovative solutions, treatments and medical devices to help them cope with their health conditions. In some cases, the patients were even able to save their own lives. However, these innovations usually occurred behind closed doors and might never have been known or used by anyone else. But if these successful innovations and knowledge were shared with other patients with similar needs, they could improve the lives of many others. With this in mind, we started developing the Patient Innovation platform. After much work, on February 7, 2014, Patient Innovation will be presented in a public event to be held at Católica-Lisbon School of Business and Economics.

Pedro Oliveira

Project Leader and Principal Investigator, Patient Innovation

Associate Professor, Católica-Lisbon School of Business and Economics

Our work is only possible due to the enthusiastic support of our Advisory Board members and our supporters (listed in this newsletter), as well as the generous sponsorship received from some institutions to fund our research.

The invaluable endorsement of some truly amazing individuals, including Nobel Laureates Sir Richard Roberts and Prof. Aaron Ciechanover, some of our most admired scholars, and many patients who suffer from chronic and rare diseases, fueled us to do a bit more than we initially planned and to embark in building a global platform.

We are very grateful for all the endorsements we have received from across the five continents. We would also like to acknowledge our host institution, Católica-Lisbon School of Business and Economics, and our main

sponsors: The Portuguese Science and Technology Foundation (FCT), The Carnegie Mellon Portugal Program, The Peter Pribilla Foundation (Germany) and The MIT Portugal Program. We hope you enjoy this new way to keep you informed of the developments of our exciting project. On behalf of all of us at the Patient Innovation Team, we wish you a happy 2014!

For more information about the project:

Patient Innovation Webpage
Brochure
Video
Facebook Page

The Patient Innovation Event

February 7, 3:00-7:30pm, Católica-Lisbon (Portugal)

Our social network and research initiative will be publicly presented at the Patient Innovation Launching Event, to be held at Católica-Lisbon in Portugal on February 7, 2014, from 3:00 to 7:30pm. This event will bring together patient innovators, scholars, practitioners and supporters of our initiative.

The speakers will include Nobel Laureate Sir Richard Roberts (New England Biolabs), Prof. Eric von Hippel (MIT), and a very inspiring group of patient innovators including Mr Tal Golesworthy ("the man who fixed his heart"), Ms Ana Luísa Vaz ("the type 1 diabetes girl who, against all odds, runs marathons") and Mr Louis Plante ("the Cystic Fribrosis Patient who developed The Frequencer"). Representatives of patients

associations, including Ms Paula Brito e Costa, the Founder and President of Raríssimas (Portugal) and Ms Dianne Petrie, Head of the Association of Genetic Support of Australasia (Australia), will share their view on the topic. Other speakers include Mr Ivan Owen, a puppeteer and artist who 3D-prints fingers and hands; Mr Harry DeMonaco, Director of the Mass General Hospital Innovation Support Center and Prof. Dietmar Harhoff (Max Planck Institute for Innovation and Competition). The event is free and open to the public. You are all invited to attend. For an updated version of the program and information about registration please check with us soon or visit our Facebook page.

Sir Richard Roberts

Nobel Laureate in
Medicine and Physiology
(Advisory Board of
Patient Innovation)

Eric von Hippel

Professor, MIT
(Advisory Board of
Patient Innovation)

Paula Brito e Costa

Founder and President Raríssimas

Ana Luísa Vaz

"the type 1 diabetes girl who runs marathons"

Ivan Owen

"the artist who 3D-prints fingers and hands"

Tal Golesworthy

"the man who fixed his heart"

Examples of Patient Solutions

What is a solution?

Any treatment, strategy, behavior, device or adaptation that patients or caregivers develop and undertake to help them cope with the daily challenges imposed by their condition. This knowledge is potentially

very valuable to others, even if the solution did not work as intended, as they can learn from the solution and suggest modifications to improve it.

Some solutions our patients shared

Mariana has cri du chat syndrome and patients with this pathology usually have an obsessive attachment to objects. She has a fixation with hair, especially when she is angry, and she pulls hers and other people's hair out. Her parents observed: "When our hair is wet, she doesn't like to touch it and doesn't try to pull it out. Because of that, we discovered that if we put hair gel on her, she stops. Now, when she is angry, we put some hair gel on her and she stops focusing on it and doesn't pull it out".

Luis has spina bifida. One symptom of this disease is a lack of sensitivity in the legs and feet, which easily creates wounds when dried too hard with towels. To prevent this, Luis says: "I put toilet paper around and in the middle of my toes, which dries them without friction and wounds."

Gonçalo, who suffers from Angelman syndrome, has a sleep disorder and is obsessed with his father. When his father is absent for a few days, Gonçalo has sleepless nights. His mother came up with a strategy: "I filled up my husband's clothes with foam, creating a whole doll. I keep this doll for the moments when my husband is away, so that Gonçalo remembers his father's smell and stays calm and snug in his bed."

The Advisory Board of Patient Innovation

We are truly honored to present the Advisory Board and the list of distinguished supporters of Patient Innovation. The Advisory Board will meet at MIT, Cambridge on February 3, 2014.

Aaron Ciechanover

Professor, Technion-Israel Institute of Technology (Nobel Laureate in Chemistry 2004)

Eric von Hippel

Professor, MIT Sloan School of Management

Katherine Strandburg

Professor, New York University School of Law

Lee Fleming

Professor, University of California, Berkeley

Sir Richard Roberts

Chief Scientist,
New England Biolabs
(Nobel Laureate in Physiology or Medicine 1993)

Robert Langer

Professor, MIT

Project Supporters

Aleda Roth
Professor, Clemson University

Carliss Baldwin
Professor, Harvard Business School

James Boyle
Professor, Duke University

Maria Carmo-Fonseca
Director, Instituto de Medicina Molecular (IMM) / Professor, Lisbon Medical School

Francisco Veloso
Dean, Católica-Lisbon School of Business & Economics / Professor, Carnegie Mellon University

Joi Ito
Director, MIT Media Lab

José Fonseca de Moura
Director, Carnegie Mellon Portugal Program / Professor, Carnegie Mellon University

Kathrin Möslein
Professor, University of Erlangen-Nuremberg / HHL Leipzig

Lawrence (Larry) Lessig
Professor, Harvard Law School

The Patient Innovation Team

(at Católica-Lisbon)

From left to right: Pierre Gein, Tomás Fidelis, Sir Richard Roberts, Pedro Oliveira, Leid Zejnilovic

•	Pedro Oliveira \| Project Leader and Principal Investigator
•	Tomás Fidelis \| Managing Director
•	Leid Zejnilovic \| Research and Operations Officer
•	Pierre Gein \| Fundraising and Finance Officer

Marina Aleixo Duarte

Patricia Pereira

Rita Oliveira

Rute Paiágua

Sofia Esménio

We would also like to acknowledge the participation of the following people in the initial phase of the project: Alexandra Ferreira, Carolina Coimbra, Yulia Aleksandrova, Matilde Czernin and Viktoriia Shcherbatiuk.

Partnerships with Patient Associations

Our project will only achieve its full potential if we are able to attract large numbers of chronic patients to the platform. For that reason, we realized it would be important to involve patient associations in our initiative. We are very happy with the positive response from patient groups and associations of various types of diseases from different geographies across the five continents. We soon expect to have a portfolio of partner associations in Australia, Brazil, Malaysia, Portugal, Spain, and the UK, among others. For now, four associations have expressed their support and intention to collaborate with Patient Innovation:

Association of Genetic Support of Australasia (AGSA)

Sydney, Australia

Australian Patients Association (APA)

Melbourne, Australia

Raríssimas - National Association of Mental and Rare Diseases

Portugal

Rede Positivo - Community of seropositive patients and friends of all Portuguese speaking countries

Portugal

Research and Outreach

One important component of our project is research in the field of Open and User Innovation. So far, three MSc theses have been devoted to the broader area of patient innovation, and have been successfully presented at Católica-Lisbon under the topics: "Users as Developers and Entrepreneurs of Medical Treatments/Devices: The Case of Patients and their Families and Friends" (Viktoriia Shcherbatiuk); "Diffusion as a validation process: learning from patient innovators" (Tomás Fidelis); and "Patient Innovation: Its Prevalence, Antecedents and Impact" (Matilde Czernin). These theses were supervised by Prof. Pedro Oliveira and Leid Zejnilovic, who is also conducting his doctoral research on this topic.

Additionally, our project and related research have been presented in many forums and academic seminars, including:

•	ISPIM Innovation Symposium in Melbourne, Australia (December 2013)
•	MIT Innovation Lab Meetings, USA (June and November 2013)
•	Latin Ibero-American Management of Technology Association Conference, Portugal (October 2013)
•	User and Open Innovation Workshop in Brighton, UK (July 2013)
•	International Annual EurOMA Conference in Dublin, Ireland (June 2013)
•	Peter Pribilla Conference at Technical University of Munich, Germany, (April 2013)
•	International Conference on Drug Discovery and Therapy in Dubai, UAE (February 2012)