Question of Quality Conference 2016 - Patient Experience - Innovation in patient experience
Patient Innovation
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description
The literature on user innovation in health-care services has identified examples of service development (including medical treatments) by users. For example, in October 1969, Richard Bernstein, a type 1 diabetes patient, came across an advertisement of the first blood glucose meter that would give a reading in 1 minute, using a single drop of blood. The device was intended for emergency staff at hospitals to distinguish unconscious diabetics from unconscious drunks. The instrument weighed three pounds, cost $650, and was only available to certified physicians, and hospitals. Determined to take control of his situation, Bernstein asked his wife, a doctor, to order the instrument for him. Bernstein began to measure his blood sugar about 5 times each day, and soon realized that the levels fluctuated wildly throughout the day. To even out his blood sugars, he adjusted his insulin regimen from one injection per day to two, and experimented with his diet, notably by reducing his consumption of carbohydrates. Three years after Bernstein began monitoring his own blood sugar levels, his complications were still progressing, and he began researching scientific articles about the disease. Bernstein, a “user”, is believed to be the first individual to self-monitor his blood sugar, and was an early advocate for such monitoring by diabetics (Bernstein 2007). Bernstein is just one of many users who developed important solutions for their own disease (Oliveira, von Hippel, and DeMonaco 2011). This is just one of the many examples in which a treatment or medical device was developed by patients. We call these examples the “celebrity user innovators”. We aim at identifying actual user innovators, and plan to share those innovations with patients that can benefit from them. Therefore the following questions should be answered: - How can we identify the user innovators in health care, and the innovations they developed? - How can we make them “visible” to society? - How does society benefit from users innovations in Healthcare services?
Transcript of Patient Innovation
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‣ 1. Introduction: user Innovation in health-care
‣ 2. Our project
‣ 3. Visible outcomes: ‣ A) International survey to identify patients innovators
‣ B) Promotional website for promoting the project (namely among patients associations)
‣ C) Social network/FB app/platform for P2P solution sharing
Agenda
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Introduction: user Innovation in health-care!
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‣ Importance of services: 77% of GDP; 79% of employment (144.4 million jobs) in the US ‣ Health-care alone 17% of GDP in the US ‣ Growth tendency in developed world (OECD, World Bank)
‣ Users are doing a lot of product development (von Hippel 1998, 2005) and service development (Oliveira and von Hippel 2011)
‣ Despite some evidence, health-care innovation literature ignores the role of users (in particular patients) as developers of new treatments
Motivation
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What are the limits of User/Patient Innovation?
British engineer Tal Golesworthy designed own heart valve implant and saved own Life (2004)
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‣ Realized that he would get depressed during winter and discovered that the reason was lack of natural light ‣ Collected data during 15 years ‣ Contacted the NIMH and was ignored ‣ Dr Norm Rosenthal at NIMH (also a SAD patient) got interested in his case ‣ He validated the knowledge and named the disease ‣ Suggested the light therapy
Herb Kern & SAD Seasonal Affective Disorder
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‣ “My disease has played a very great role for my whole development... The disease was responsible for my starting investigations on light:
‣ I suffered from anaemia and tiredness, and since I lived in a house facing the north, I began to believe that I might be helped if I received more sun. I therefore spent as much time as possible in its rays.”
Previous work on the effect of light…
Niels Ryberg Finsen, The Nobel Prize in Medicine 1903 Q)5!%#0&J5)R&5!&8!7)3!0&5.%)4:R&5!.&!.7#!.%#+.=#5.!&8!$)3#+3#3,!#3G#0)+((C!(:G:3!*:(J+%)3,!S).7!0&50#5.%+.#$!()J7.!%+$)+R&5T
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‣ Type 1 diabetes patient (entered med school when he turned 45 y.o.) ‣ Began measuring blood sugar 5 times/day and refined his insulin and diet regimen to the point that they were normal around the clock ‣ The first individual to self-monitor his blood sugar
Richard Bernstein and diabetes
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‣ To what extent & under what conditions can patients innovate? ‣ Can patients identify new diseases and develop new medical treatments/devices?
• We focus on chronic diseases as it is more likely that patients try to find a solution for a long-lasting problem ‣ 1) Respiratory diseases: Cystic Fibrosis, Asthma, Sleep Apnea ‣ 2) Prostheses: devices to replace missing parts of the body or to make them work better ‣ 3) Cancer ‣ 4) Diabetes ‣ 5) Medical devices and treatment for general purposes
Research question
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Research plan Adapted from Oliveira and von Hippel 2011
1. Sample of 56 treatments or medical devices ‣ 1) Respiratory diseases: Cystic Fibrosis, Asthma, Sleep Apnea ‣ 2) Prostheses: devices to replace missing parts of the body or to make them work better ‣ 3) Cancer ‣ 4) Diabetes ‣ 5) Medical devices and treatment for general purposes
2. Identification of date of commercial introduction of TTMD Browsed the internet, scanned trade journals and/or articles for dates of introduction
3. Identification of the sources of innovation and coding Identify user practices through literature searchers and internet browsing
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Cystic Fibrosis ‣ Most common autosomal recessive disease in Caucasians occurring with a frequency of 1-2000 to 1-3000 births !
‣ About 30,000 patients in the US!
‣ No cure, but treatments can ease symptoms and reduce complications (and prolong life span)!
‣ The median life expectancy reached 37 years in 2005, compared to 5 years in the 60’s!
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Treatments for Cystic Fibrosis Most treatments are aimed at keeping the airways free of mucus
Based on “Ketchup Bottle Principle”: to get a substance out of a container with a narrow opening, you turn it upside down and then clap it, shake it and vibrate it
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Low frequency generator for bronchial drainage
‣ Louis Plante (CF patient) had to leave a concert due to excessive coughing (seating in front of speakers)
Being a skilled electronics technician, he developed a device that generates low frequency vibration He founded DYMEDSO
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Cystic Fibrosis treatments
‣ Emily Haager, CF patient & surfer ‣ A typical day: ‣ 4 breathing treatments/day (1 hr each) ‣ daily regiment of over 45 pills, incl. antibiotics to keep lungs healthy, enzymes to digest the food, vitamins, etc ‣ began surfing and realized she started feeling much better shared the news with doctors
Medical breakthrough: "saltwater” treatment The New England J. of Medicine, Jan. 2006
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Chest percussion with electrical percussor
“My daughter, 26 with CF, depended for most of her life on us, her parents to do her chest physiotherapy. So her independence was constantly compromised and she hated it. On other hand, we not always delivered the best physiotherapy, simply because were tired, or didn't have all this time required or were sick. Sure, you know all of this ... !Many times I was thinking about a simple solution, which would deliver a good physiotherapy and wouldn't require a caregiver. And I am very happy, I could do it. My daughter uses my eper 100 (stands for electrical percussor, and 100 symbolizes all my percussion ideas which were never realized) all the time. According to her it is much better than the human hand and she can do it alone. I got good reviews from the hospital for sick children in Toronto. !
Hanna Boguslawska” Mother of Natalia and founder of eper ltd. (March
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Use of trampolines by children
Our questions: Did a patient or patient's family have any involvement in the initiation of the study?#
Dr.J. K. Stanghelle: “The answer is YES ! We were performing different studies with physical exercise and cystic fibrosis (CF) at that time, and this was a time when it became growing interest for such therapy, contrary to "normal medicine" these days. We were discussing in several fora what kind of exercise that could be fun and effective for children with CF, and we got to hear about a young girl with CF that had a trampoline that she wanted to use many times a day for long times, and the parents observed that she didn't need to use extra treatment for lung drainage in addition.”#
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