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Newsletter #2

September 2014

Exciting times ahead...

A lot of things have happened since the launch of our platform last February at Católica-Lisbon. First of all, we would like to thank our supporters and especially the users of the platform who believed, from day one, that the sharing of solutions can help others. We are providing an infrastructure to facilitate the sharing but the innovations are yours!

Looking ahead, in the next couple of months we will launch an improved version of the platform with new features (Patient Innovation 2.0). These enhancements will allow a better user experience always keeping in mind the sharing, so that we can increase diffusion within the community. In parallel, we have invested significant efforts promoting the platform. Patient Innovation was featured in conferences around the globe from Australia to Singapore and the US, as well as in meetings with patient associations of various diseases.

To further increase the visibility of our project and the phenomena of innovations that are developed by patients and caregivers, we are launching the Patient Innovation Award, an award intended to distinguish three categories of solutions: solutions by patients, solutions by non-professional caregivers and, solutions by collaborators.

Also, we are currently participating in the "Health Acceleration Challenge" at Harvard, where out of over 75 projects, we have been among the most visible applauded projects. Your "applause" can make a difference.

We are also excited with the upcoming Patient Innovation Forum that will take place in Minneapolis on November 3rd, and will be hosted by The Medical Industry Leadership Institute (MILI) and the University of Minnesota Carlson School of Management. We are grateful to Prof. Enno Siemsen for his leadership in organizing this event.

We have exciting times ahead as we are increasing the user base and the solutions posted. We are looking forward to these challenges and reorganizing our team accordingly. We are pleased to welcome Mr Buchanan, the former Director of the Luso-American Development Foundation, as a counselor.

In addition, in this newsletter, you can remember our launch event. Watch video.

The Board of Patient Innovation

P.S. For more information about the project, visit:

Patient Innovation Webpage
Brochure
Video
Facebook Page

Harvard's Health Acceleration Challenge

Patient Innovation needs your support. Our non-profit project is participating in the Harvard Business School (HBS) & Harvard Medical School (HMS) Health Acceleration Challenge! Over 75 projects are currently participating in the competitions. Finalists will share $150,000 in prize money, attend the HBS-HMS Forum on Health Care Innovation Conference in April 2015, and have an HBS case written about them. Support us by "applauding" this initiative directly in the website! Your participation is important. Participate here.

1^st Patient Innovation Awards

Patient Innovation wants to recognize innovative solutions developed by patients or caregivers of any disease that have helped improving the health condition of other patients. The award is intended to create awareness of patient innovation and encourage patients/caregivers to actively search and share solutions. All solutions, treatments or devices shared in the platform until October 22 will be eligible for the awards.

We have three categories:

Solution by a Patient - if you are a patient and have developed a solution to improve your health condition

Solution by a Non-professional Caregiver - if you have helped a loved one to handle his/her health challenge

Solution by a Collaborator - if you have helped someone to solve his/her health related problem (e.g. a 3D printer enthusiast who has helped a patient develop a solution)

The best solutions are those with the highest potential of helping other people deal with their diseases. The selection procedure will be as follows: The Patient Innovation team selects the finalists in each category and propose a shortlist to the Advisory Board for final decision. The PI Award winners will be announced in a public session in Lisbon on February 6, 2015. For more information: Check Patient Innovation Awards poster.

Patient Innovation Forum in Minneapolis

The Medical Industry Leadership Institute (MILI) and the University of Minnesota Carlson School of Management will host The Patient Innovation Forum on November 3rd. The area of Twin Cities of Minneapolis and St. Paul (Minnesota) is an important health-care and medical device cluster in the US.

This forum brings together patient-innovators, social network pioneers and strategic decision makers from the healthcare industry to discuss the implications of patient innovation on the industry. Confirmed speakers will include Mike Finch (Managing Director, Medical Industry Leadership Institute), Enno Siemsen (Professor, Carlson School of Management), Rick Tanler (Mill City Innovation and Collaboration Center), Tal Golesworthy (the man who developed the Personalized External Aortic Root Support that saved his own life), Ivan Owen (the artist who 3D prints fingers and hands) and various members of the Patient Innovation team such as Pedro Oliveira (Professor, Católica-Lisbon and Project Leader), Helena Canhão (Professor, Lisbon Medical School, Project Leader and Chief Medical Officer), Pierre Gein, Health Innovation Lab (HiLab) and Leid Zejnilovic (Católica-Lisbon & Carnegie Mellon University).

Please join us for an exciting event. For further info about registration, please contact siems017@umn.edu.

Mr Charles Buchanan becomes Counselor of Patient Innovation

We are happy to announce that Mr Charles Buchanan has become Counselor of Patient Innovation. Charles Allen Buchanan was Director of the Luso-American Development Foundation. Mr Buchanan has extensive diplomatic service with AID (Agency for International Development), including 26 years in foreign service with the U.S. Department of State, where he was responsible for running economic cooperation programs in Argentina, Brazil, Peru, Central America and Portugal. He is a graduate in engineering (U.S. Naval Academy of Annapolis), Master in International relations (University of John Hopkins), MBA (MIT Sloan School of Management). The U.S. government decorated him with "A.I.D. Meritorious Honor Award" and the Portuguese government with the medal of the Order of Infante D. Henrique.

Charles Buchanan with the Patient Innovation team in a recent trip to Brussels. (from right to left: Charles Buchanan, Pierre Gein, Helena Canhão, Pedro Oliveira)

NEXT ADVISORY BOARD MEETING

The Patient Innovation team met with the Advisory Board for the first time on the 3rd of February at MIT Sloan. In line with the strategic advice received, Patient Innovation has already made some structural changes, including the possibility of allowing users to see solutions without having to register and the removal of any drug and food related content from the platform.

The Advisory Board will meet again on October 31^st at MIT Sloan, Boston.

(from right to left: Prof Eric von Hippel, Prof Lee Fleming, Sir Richard Roberts, Mr Leid Zejnilovic, Prof Francisco Veloso, Prof Robert Langer, Prof Pedro Oliveira, Mr Pierre Gein, Prof Helena Canhão, Mr Tomas Fidelis, Prof Kathleen Strandburg on the computer)

Remembering The Launch Event

February 7, Católica-Lisbon (Portugal)

The outcome of the Launch Event was significant as we had the pleassure to meet with patient groups who shared their amazing solutions. In addition, respected members of the scientific community, such as Prof Eric von Hippel, Sir Richard Roberts, Prof Dietmar Harhoff, Prof Kathrin Moslein and Mr Harry DeMonaco, shared their

views on this initiative.

The interactions between all the attendants seem to have enriched everyone, but we feel that this event can hardly be described in a newsletter. To watch a video with the most interesting experiences shared on stage, click here.

The photo album of the event is available here.

The Launch Event in the Media

The launch event was widely covered in the media. Click here to watch the videos and other news articles.

New Partnerships with Patient Associations

Patients and caregivers are central to this project. In order to reach them, we strive to create close relationships with Patient Associations around the world. Just recently, we started twelve new partnerships! From Croatia, Ljubav na Djelu. From Malaysia, the Malaysian Rare Disorders Society and the Psoriasis Association of Malaysia. From Portugal, AA1P - Portuguese Alfa1 Association, ANEA - National Association for Ankylosing Spondylitis, APDP - Portuguese Diabetes Association, Associação Laço (Breast Cancer), Associação Salvador, BIPP - Bank Information from Parents to Parents, DEBRA - Portuguese Epidermolysis Bullosa Association and SPEM - Portuguese Society of Multiple Sclerosis. From Serbia, NORBS - National Organization for Rare Diseases of Serbia. And finally, from the United Kingdom, Diabetes UK.

Partnerships create fertile ground to nurture and encourage the sharing and dissemination of innovations created by users. We will continue our efforts to promote Patient Innovation alongside new patient associations around the world. Their help has been invaluable in spreading the word within their communities, both online and offline. Whenever possible, we have also held meetings with patients, to encourage face-to-face discussion and dissemination of experiences. We believe that whatever the means they utilise, when a group of people openly debates their condition, this dramatically increases the opportunities for knowledge sharing and innovation.

Research and Outreach

One important component of our project is research in the field of Open and User Innovation (OUI). We conduct this work in the context of the new Health Innovation Research Group (HiResearch), a multidisciplinary research group that brings together researchers from management, economics and health sciences from Catolica-Lisbon School of Business and Economics, Lisbon Medical School - University of Lisbon and Nova Medical School - Universidade Nova de Lisboa. We develop research in health innovation, with a particular focus on user innovations by patients, doctors and other health professionals. HiResearch is part of a broader set of collaborative initiatives, which also includes the Health Innovation Lab - HiLab (a forum that brings together people from industry and academia to share, learn and experiment new ideas and concepts) and the Health Innovation Program for Executives - HiProgram (a training program for executives interested in health innovation).

Additionally, our project and related research have been presented in: Crowdsourcing Week Global, Singapore; Technoport, Trondheim, Norway; Technological Innovation, Entrepreneurship and Strategic Management (TIES) seminar at MIT Sloan, Boston, USA; European Conference on Rare Diseases & Orphan Products, Berlin, Germany; Medical User Innovation and Medical Knowledge Commons Workshop, NYU School of Law, New York, USA; 12th Open and User Innovation Workshop, Harvard Business School, Cambridge, USA; Global Shapers Community, Lisbon; Boundaryless Hospital, Leipzig, Germany.

Some solutions our users shared

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.

Cystic Fibrosis

Jump on a pilates ball: the therapy of my 2 year old daughter includes jumping for about 20 minutes over a pilates ball. Of course with help: she sits and I or my husband sit down behind her (on the couch for example) and grab her by the waist to make her jump. Due to the characteristics of her age, this is easier if done while we watch cartoons.

Adapted from user Filipa.

Fibromyalgia
I suffer from fibromyalgia, and often have my atrophied upper limbs, and with such a stiffness that it prevents me to do a series of tasks, such as washing and druing my hair. For the second I adopted a system: went to a store of products for hairdressers and bought a thermal bag to make curls. After washing the head, I comb my hair the way I want to be, put the thermal cap on the head, insert the end of the hair dryer on the cap and after 30 min I have dry hair.

Adapted from user moura.amm.

Alzheimer's Disease
My father is 80 years old and has Alzheimer's Disease. He still has fine motor autonomy (e.g., use of cutlery). However, any physical detail can confuse and derail him, causing him to give up what he can still do by himself. All the dishes we use at home have beautifully colored flowers and small branches around the rim (my mother likes bright colors everywhere). Three months ago, I noticed that he was trying to get food from the rim of the dish, rather than at its center and spent much time in this "search", eventually getting bored and giving up eating. I bought completely white dishes, and since then, he began to eat by himself again. I am completely convinced that it is essential to reduce the noise to their sensations and perceptions, so he does not lose its attention from what he wants to do. Thank you.

Adapted from user 200017.

ALS and Patient Innovation

Amyotrophic Lateral Sclerosis
The best treatment for leg swelling that I have found is something that I discovered entirely by accident: More time in bed. When my husband was working, I spent about seven hours in bed at night and then would lie back in my recliner for another two or three hours in the afternoon. Even with that, my legs were swollen by noon, miserably uncomfortable by evening and absolutely painful by bedtime. When my husband retired, instead of spending 10 hours lying with my feet up in two separate sessions, I began spending 10 hours or more in bed all at one stretch. Within a matter of days after starting this routine, I noticed that the swelling was minimal. Now I don’t even have to lie down in the afternoon in order to be comfortable in the evening!

Adapted from user Diane Huberty.

Amyotrophic Lateral Sclerosis

For ALS patients who needs a little help holding onto tableware while eating, velcro rings with magnets can be very useful. I used hot melt glue to glue a quarter-size neodymium magnet to the center of a strip of loop-side velcro that is long enough to go around the thumb or little finger. A piece of hook-side velcro is used to join the two ends on the other side of the finger and hold the magnet in place. With one magnet on the thumb facing up, and one on the little finger facing down, one can control the handle of a stainless steel fork, knife, or spoon in the hand much more easily.

Adapted from user Thinkenstein.

Amyotrophic Lateral Sclerosis
One solution that help in dealing with the problem of dressing and using the bathroom is: open back adaptive slacks. The instructions to create this kind of slacks can be seen here.

Adapted from user Diane Huberty.