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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
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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.
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1st 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.
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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.
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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.
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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)
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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
31st at MIT Sloan, Boston.
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(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)
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Remembering The Launch Event
February 7, Católica-Lisbon (Portugal)
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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
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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.
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The photo album of the event is available
here.
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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.
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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.
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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.
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Research and Outreach
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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.
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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.
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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.
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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.
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ALS and Patient Innovation
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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.
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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.
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Please
help promote Patient Innovation and this newsletter.
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