PZG - Patienten Zonder Grenzen
Over de innovatie
Currently the process for the detection of these conditions is inefficient and time consuming. The patient journey requires a minimum of seven visits to several different medical experts who often carry out similar medical tests. Often patients are left confused and disheartened by the length of the process.
We see that there is a current mismatch between technological capabilities and the journey of patients through the cardiogenetic diagnosis process. In order to help provide the vital care many desperately need we will build a patient portal that enables direct access to premium healthcare. We will allow patients to have their health data screened reliably, no longer relying on those that do not know.
1) Lack of knowledge within the general population – people do not recognize the need to get tested.
2) Lack of knowledge among general practitioners, coroners, emergency departments and general cardiologist – because of this many patients do not get referred to the hospital in the first place, or they do not get referred to the right specialist. Hence the health of patients is put at risk.
3) Because the general practitioner decides if a person is referred to the hospital, people are not in charge of their own health (status). As general practitioners lack the knowledge and skills to correctly diagnose, patients do not receive the treatment they need and they cannot make informed choices.
4) After a person has been diagnosed, proper follow-up treatments should be in place. However, the reality shows differently. Specialist doctors are only located within the 8 university hospitals. After being diagnosed patients usually go back to their own cardiologist or a cardiologist closer by. As a regular cardiologist does not have the knowledge about cardiogenetic disease, patients do often not get the treatment they should have. Because of this, the health of patients is put at higher risk than should be.
5) In the case of sudden cardiac death at a young age, it is crucial that family members get informed about the relevance of an autopsy in order to make an informed choice and whether they should visit a specialist. If no autopsy is performed, whole families should be seen in practice in order to find the real cause of death (e.g. making family trees – calculating genetic risks), while autopsy can investigate the real cause of death. Research has shown that autopsy is only performed in few cases.
6) Furthermore, there is no unified research database that integrates information about patients that are seen within practice. This significantly restricts the speed of research and development. Hence it is restricting new discoveries that would benefit the lives of patients suffering from this disease.
By providing such a platform where we can pre-screen patients (using the same standardized questions that are asked during a hospital visit), get in touch with them if needed (using Ehealth - telemedicine) and refer them to the correct professional. Using this concept we believe it is possible to reduce actual hospital visits to 3. This would drastically reduce the time needed to get a diagnosis for existing patients and by streamlining this process, it makes healthcare services widely accessible and hence reach out to the 61% of people who are currently unaware of their disease. Please see figure 2 for a more detailed description of our idea.
The patient portal provide patients the autonomy to provide their own needs with regard to care. They can take direct contact with the specialist without involvement of a general practitioner. If needed they are referred to the correct expert, at the right place and time. Hence it will lead to higher cost efficiency. Moreover, the project will stimulate prevention by integration of various ICT-technical devices, of which they will become connected to the patient record. Because of this, the patient will become more aware of his/her lifestyle and current condition.
Strengthen of valorization chain life sciences
The portal is focused on patient centered and efficient service providing. Experts are stimulated to use new, patient centered treatment measures.
Elaborate on next generation infra- and info structures
Both patients and experts have access to the portal. Using this, information and results can easily be shared. PZG will develop technology in which linguistics, hypothesis and evidence based learning play important roles. The innovation is made by the quality and speed of patient care that will be delivered by using evidence based medicine.
Innovation (more concrete):
• Provide cloud based platform that facilitates various services between patients, families and experts (direct contact)
• Significantly improve diagnostic process
• Empower patient - Patient complete control of their data
• Personalized treatment,
• Possibility to be re-contacted
• Opt-in for using medical data for research purposes
• Streamlining information sharing to family members
• Focus on early identification and prevention
• Digitisation of healthcare
• Easiness of uploading, sharing and control over electronic health records.
• Stimulating complete Transparency
• Provide evidence based care
• Patient empowerment - provide patients the ability to look into their own medical file and let them be in charge of who has access to their record (e.g. for example during Econsulting)
• Provide clear and comprehensive information about both disease and patient pathway
• Stimulate dialogue between doctor and patient by engaging patients (create involvement) and hence stimulate more in depth deliberation during decision making process
• Use portal within professional practice, providing Econsulting - using Ehealth applications
• Use portal to provide diagnoses based on medical information from patient records
• Portal can be used to send reminders / re-contact patients once needed (e.g. new discoveries on diseases - treatment)
• Use portal to create national research database on cardiogenetic disease
• To unify research designs, set-ups and results
• To stimulate research purposes
• To link research database to patient medical file (option to become re-contacted in case something new has been found)
• Used by the laboratory specialist to contact doctors in case new things have been found (update) and discuss guidelines and methods
• Meddex, IBM watson (open for cooperation and innovative) ,
• Philips Ehealth
• Different ehealth telehealth providers (e.g. KYSOS, Philips)
PZG’s is unique in targeting a niche market (namely cardio genetics) with a data storage platform and connecting it to experts that are not easily accessible for most entrepreneurs. This distinguishes us from our competition and puts us in the unique position to achieve a tangible goal and use cardiogenetics as a stepping stone for other genetic disorders.
An estimated 1 in 500 people are suffering from a cardiogenic heart disease. Among the population 1 in 1000 people die from sudden cardiac death. Notably, prevalence among sporters and certain populations is three times higher compared to average population.
First we verified all our key assumptions and the customer’s pain (according to the method of Alex Osterwalder - lean business canvas) .
1.Who are our customers?
2.What are the characteristics of a specific value proposition within our business model (products/services, gain creators, pain relievers)
3.What is the customer profile (customer jobs, gains, pains)
4.Do we have a problem – solution fit?
5.Do we have a product – market fit?
6.What would be a strong business model offering our services?
We want to investigate whether or not our services are economically feasible. Therefore we would like to build a prototype and implement it within a hospital as a proof of concept.
1.How should the concrete technical and non-technical requirements of the infrastructure design look?
2.How can a safe infrastructure connection be made between PZG and the various eHealth platforms of hospitals or other healthcare providers?
3.How should the user interface of various types of users look like? And how can this be made user friendly?
4.To what extent can security be provided about identification, authentication and authorization with regard to individual medical patient files?
5.How can PZG be secured (e.g. privacy in design, compliance in design)?
6.How can PZG be developed so that future scaling up to other genetic diseases within medical fields will be possible?
7.How can the portal be protected from an intellectual property standpoint?
8.How would a certain mechanism to re-contact people look like in case new knowledge would be known about his/her disease and/or treatment?
1.What are the potential markets of PZG and what are the competitors within these target markets (e.g. competing portals)?
2.Develop a strong multimedia marketing campaign?
3.Who could be potential partners to answer technological knowledge questions and with regard to commercial realization phase after the future innovation project?
4. Which business aspects need to be outsourced and what will be the associated costs?
5.What will be the legal costs incurred for compliance with patient safety laws?
10. How many testing subjects were involved and which background did they have?
The whole cardiogenetic field is rather small. We have talked with all the major players in the field in both the Netherlands and Switzerland as well as contacting EHealth professionals in Estonia and Denmark.
Thus far we have spoken to:
· Cardiologist specialized in cardiogenetic disease,
· Clinical geneticists,
· Genetic counselors and
· General practitioners.
We have also spoken to coroners, emergency department and various patient federations, such as the heart foundation and NPCF.
Furthermore, as we attempted to establish the customer journey from different perspectives, we also got in touch with representatives of all stakeholders involved to verify the problem and gain their support. These were:
Hospitals - Cardiogenetic experts:
UMCG – University Medical Center Groningen
Prof. I.M van Langen – introduced the cardiogenetics in the Netherlands together with world famous cardiologist A.A.M de Wilde
Dr. M. Plantinga (post doc) – responsible for the implementation of innovation within the field of cardiogenetic at the UMCG.
AMC – Amsterdam Medical Center
Prof. J.P van Tintelen – Prof. J.P van Tintelen – Prof. within clinical cardiogenetics department of AMC, member of the management team of the Durrer Cardiogenetics Research Center and chair of the national working group on cardiogenetics - closely involved in an international network (Padua–Italy, London–UK, Boston and Baltimore–USA) studying different aspects of AC, responsible for the PHORECAST (phospholamban related cardiomyopathy study) database, the largest clinical database worldwide of patients with a single AC-related mutation.
Christian van der Werf, MD, PhD - is based in the Department of Clinical and Experimental Cardiology at the Academic Medical Center in Amsterdam.
He is the author of numerous papers on sudden arrhythmic death syndrome, including the epidemiology and clinical aspects of sudden cardiac death in the young.
Prof. dr. E.M.A Smets – She is the Dutch National representative of the European Association for Communication in Healthcare (EACH).As a researcher she is active in the fields of quality of life, communication, patient satisfaction, information giving and behaviour change counselling. As Principal Investigator she coordinates the research line Medical Communication at the department of Medical Psychology of the Academic Medical Centre, University of Amsterdam.
UMCU – Utrecht Medical Center Utrecht
Dr. H.F Baars – Cardiologist specialized in cardiogenetic disease (especially into LQT syndrome among the young). He is has introduced cardiogenetics within 6 hospitals in the Netherlands. He is consultant specialist in IMED Hospitales Levante en Elche in Spain, member of several cardiogenetic boards and chief editor of the educational book clinical cardiogenetics,
Hirschlanden Clinic- (Largest private hospital within Switzerland)
Prof. dr. T. Szucs – is Professor in Pharmaceutical Medicine and Director of ECPM at the University of Basel. Previously he was Chief Medical Officer of Hirslanden Holding, the largest private hospital chain in Switzerland. From 1998 to 2001 he was head of the Department of Medical Economics, a joint venture of the University Hospital in Zurich and the Institute of Social and Preventive Medicine of the University of Zurich. Professor Szucs’ former appointments include head of research and founder of the Center of Pharmacoeconomics of the University of Milan, head of the working group for Clinical Economics at the University of Munich, senior consultant at Arthur D. Little Inc and head of the Department of Health Economics at F. Hoffmann-La Roche Ltd. in Basel. Professor Szucs was appointed professor of pharmacology / pharmacoeconomics at the School of Pharmacy of the University of Milan in 1996 and associate professor for medical economics at the University of Zurich in 2002. He holds a medical degree from the University of Basel, a Masters in Business Administration from the University of St. Gallen, Switzerland, a Master of Public Health degree from Harvard University, and is board certified in Pharmaceutical Medicine as well as in Prevention and Public Health. Recently, he has received a LL.M in International Business Law with a specialisation in Information- and Technology Law from the University of Zurich. He is also member of the editorial board of several scientific journals and has published more than 200 articles and book chapters
E. Vollebregt - Life Sciences and IP lawyer based in Amsterdam, one of the founding partners of Axon Lawyers as of 1 September 2011, with a particular focus on medical devices.
Patients: 10 patients
Hospital managers: 1
Lawyer: 1 (law - regulation site)
Strategy wise (the way to go) : 2
*Gained access to important findings from interviews with patients/ doctors from various Phd dissertations
“This is exactly what the fields needs” –
Prof. Dr. I.M van Langen, co-founder of cardiogenetic field within the Netherlands, UMCG
“Your concept is really touching it. You can ensure more patients to the right place in a faster way and provide higher quality” –
dr. C. van der Werf
“I will give you our full support” –
Prof. Dr. J.P van Tintelen, AMC
“We need innovators to built this for us” –
dr. H.F Baars, UMCU
“Yes, it is really interesting. I have often envisioned what else I could do to change the current situation. But I did not know what to do, as there are so many people involved and work to be done to drive change” –
dr. C. Van der Werf
“We would be willing to implement this into our hospital as proof of concept” –
Prof. Dr. T. D Szucs, doctor, former chief Hirschlanden Clinic, and chief Helsana Inc. (Swiss health insurance)
“Speaking as the chair of Helsana, the largest Swiss health insurance company, I can confirm that such an initiative that makes the healthcare system more efficient by reducing redundancies is preferable for insurance companies. Also, we promote preventative management of cardiac conditions over treatment. This means that from the point of view of an insurer we are interested in working with such teams.” –
Prof. dr. T. D Szucs
“Extremely interesting concept! I hope your initiative succeeds – once you get funding we can do business” –
IBM Watson (artifical intelligence)
“This is the way to go! Let’s try to get selected for Rockstart accelerator program” –
R. Peters, Deloitte
• We are all of a scientific background and are aware of the large change that will happen to medical industry with new technological developments. However, our solution is going require relatively complex IT skills, beyond the ability of our team. For this reason we need to investigate how we would be best to build this
• Find developpers to strenghten our team.
• We need to obtain funding in order to develop and build the patient portal.
• We need to investigate exactly how we are best scaling our product.
In addition to the various experts we were able to bring onboard, we were also able to reaffirm our problem with actual patients that had undergone the process. These interviews revealed that we were indeed solving an important customer pain and further supported the great potential of this project.
Furthermore, throughout the Sustainable Healthcare Challenge, we have been working under the mentorship of Shannon Tan and Rob Peters, founder of “Assuring Medical Apps” at Deloitte. Their expertise in the field of ICTS as well as business acumen has been invaluable source of guidance for us. We have also begun very promising talks to affiliate with experts at the university hospitals in Amsterdam and Groningen. In addition, we have sought the guidance from Eric Vollebregt of Axon Lawyers, who has been a crucial source of information on healthcare legislation and at providing contacts to individuals in countries where EHealth standards are more advanced.
• Insurances have indicated that they are interested in focusing on prevention over treatment. This shows that our project has financial feasibility.
• Multiple independent parties have indicated that they are keen to work closely with ourselves; among these include insurers, hospitals and medical experts. Patients have also indicated that they are ready for such a solution.
• Specifically the hospital Hirschlanden Clinic (of Switzerland) has indicated that they want to implement a prototype of our solution.
• As well as the previously mentioned, UMCG has demonstrated an interest in working a prototype for their research departments.
With Susanne’s experience in the cardiogenetic sector, as well as being the daughter of one of the worlds leading cardiogeneticist, we choose to begin our project by focusing on stream-lining this process which is especially cumbersome for patients. These characteristics provide Susanne with the know how and network. However, this is no simple task - we believe the overwhelming and seemingly endless task at hand has been a deterrent in the past. However, much like lab based scientific developments that require achieving small tangible goals (a process particularly familiar to Philippe), we believe this is possible. Along with Tom’s strategy orientated long-term vision, we hope to scale this project to include a host of other inefficient processes currently found in healthcare.
“The team demonstrated passion and drive from our first meeting. This encourages me that this team of young scientifically minded entrepreneurs have the drive and vision to see this startup grow and more importantly, bring about real change.” - Prof. dr. T.D Szucs
Susanne is a master student Applied Ethics at the University of Utrecht. Previously she has completed her Masters in Neuroscience and Cognition at the University of Utrecht in 2013 and her BSc in Biomedical Sciences at the University of Amsterdam in 2011. As part of her studies she has done multiple internships abroad. Among them she has undertaken stem cell research at Harvard University, worked at the headquarters of the World health organization in Geneva and she currently came back from doing research at Peking University (Beijing, China). Upon her Studies she has also been engaged within several honours programmes, namely the Young Innovators League (YIL) and the Utrecht University Business Course. Susanne is very passionated to work at the interface of science and technology with complex (societal) issues and to create awareness and impact by thinking differently.
Thomas studied his BSc in Genetics and Microbiology at the University of Sheffield, and is currently finishing his Masters in Science and Business Management at the University of Utrecht. Tom has ample experience working in a genetic labs, having done so in various University of Sheffield and Hubrecht Institute labs. He has comfortable grasp of pythonic coding, which he developed when creating bioinformatic tools for his Master thesis. He also developed a strong grounding in finance, having undertaken an summer internship working for the stockbroking firm Langton Capital. He is enthused by entrepreneurial endeavours and has completed extracurricular honors programs (UUBC and SHC) as well as an internship at Holland Startup to further develop these skills.
Philippe is of German descent although he was born in Belgium and grew up in Thailand. After completing a BSc in Marine Biology and Microbiology at the University of Cape Town, South Africa, he went on write his honours degree in Molecular and Cell Biology at the Marine Biotechnology lab there. Following further internships at that same institution and keen to see the applications of lab based developments, Philippe went on to intern with the Pharmaceutical giant – Sanofi Aventis. Intrigued by the business side of pharma and after a brief stint travelling through Western Africa, Philippe eventually made his way to Utrecht University to study a masters in Molecular Biology and Business Management. This is also where he met the other like-minded individuals of this team. Combined with Tom’s British nationality, we hope to reverse history by creating a new advent of British-German cooperation, unified through a Dutch foundation!
We have created an unique network of cardiovascular geneticists, and we believe the platform will become a standard software for their professional use. This will in turn encourage the adoption of our software by hospitals.
We also plan to reach our final user by utilizing healthy living vouchers in exchange for our product. Our product promotes healthy living and therefore the type of customers we are attracting will be of higher value for healthy living companies.
We have provided a presentation to IBM Watson. We have been asked to pitch during the annual cardiogenetic symposium (Barcelona) 2016, furthermore we will be pitching at the Health hackathon Groningen, May 2016. We aim to present our idea to accelerator programmes (e.g. Rockstart) soon.
Functionalities that we can imagine to be very valuable are:
• Second opinions: Cardiologist can send in medical information about patients and experts can provide diagnose using Ehealth applications.
• Storage of DNA sequence within a special, highly secured, place within the patient medical file. Of note is the fact that, only the patient has the authority to decide with whom their information will be shared with. Whoever participates has securely save and disposable sequence in the cloud (up to patient desire). One can use this during different stages of his/her life. Instead of having your genome sequenced tested multiple times, one could simply run a test against stored genomic data. One can now rely on a single test moment and use the results in case new information is available.
• Optimization of treatment – therapies: it is well known that drugs – medicine do not work for everyone. This often relates to the genetic makeup, which is determined by geographic events. For example, people from Africa respond differently on certain pharmacokinetics than people from Asia or the Dutch. Even so for side-effects of drugs. Therefore it is sometimes important to know someone's background in order to choose a treatment. Storage of your DNA sequence and using this information to screen along existing literature to see what treatment would best fit your condition would add tremendous value.
• Follow up & prevention: We think we can provide evidence based health treatment by integrating health monitoring, evaluation and surveillance systems within the portal and linking to patient medical files. Currently, Google combines data with digital epidemiology: tracing flu rates with google algorithms. Our system could benefit population health (as well as individual health) by being able to better monitor, evaluate and survey (protect) people suffering from a genetic heart disease by integrating the use of devices & wearables into the patient medical file and hence connect it to the portal (e.g. building an analytics programmes that could provide automatic warnings if certain pattern is observed).
By first focusing on cardiogenetics, we will be able to develop a product for a niche market; a product that can easily be adapted to other genetic diseases. By developing a patient portal that connects to cardiogeneticists we are setting up a framework that will allow us to target experts in other fields by slightly adapted the platform that we will have developed.
Right now, we are focused on end users being patients among the general population. However, we have begun research on a customer segment 3x more likely to die of sudden cardiac arrest – namely football players. It is our wish to utilize our expert cardiogenetic network to supplement current screening procedures of top-level athletes. We believe that not just football clubs will have an interest in the top level screening procedures but also Sponsors. Sporting sponsors, whose brands are associated with the performance of their clubs, may be interested in our portal to ensure that their brand image does not receive any negative attention (e.g. a football star sponsored by a famous health conscious brand, dying would generate such bad press).
Provide validated proof
Verified the need for a solution
Approached potential customers and stakeholders
Phase 2: May - August
Define prototype, setting and context
Phase 3: August – December
Develop prototype (minimal viable prototype): Takes 1 – 6 months, with team of 2-3 developers (full time work).
Phase 4: Proof of concept
Test prototype and go live: 3 months (beginning 2017). Based on the suggestion that we get funding, take part of an accelerator program and find developers to strengthen our team.
Onderdeel Taakomschrijving Planning
1.Patent research Research into patent possibilities and certificates research 01 aug 2016
–30 okt 2016
2.Literature research Research of relevant literature 01 March 2016 –31 Aug 2016
3. Investigation of available technologies/expertise Investigate available technologies on market/available Technical report 01 March 2016 – 31 Aug 2016
4.Market research Investigation of possible competitors, partners or investors. Report market analyses 01 March 2016 –1 September 2016
5. Experimental development First prototype (within hospital) Basal prototype (minimal viable product) 01 January 2017 –31 March 2017
6. Report Answer feasibility questions and proof of concept Final report 01 March 2017
–31 June 2017
We anticipate relatively high costs to be incurred during the development of patient portal. With this in mind we expect high development costs, however, upkeep costs should be low. We believe that after the first two years of operation we should be in the black.