People are more powerful, and potential consumers are concentrated in doing business. Mention the patient community and believe this is the first reaction of many people.
In fact, the connotation and function of the patient community have long gone far beyond this.
On the basis of taking stock of various patient community operations, the arterial network will explore the use of valuable data from the patient community and how to empower upstream and downstream partners such as pharmaceutical companies, research institutions, and insurance companies.
Today's patient community
There is an old saying called "long illness into a good doctor." The implication is that the patient's illness experience is also valuable. However, the patient's experience has been largely untapped. The treatment experience of both doctors and patients can only be refined and summarized by doctors and passed on.
However, the doctor's summary process cannot take into account many non-medical factors that affect medical outcomes. The doctor's experience summary process has begun to optimize tools such as machine learning, artificial intelligence, and algorithms. In fact, in terms of patient experience, the professional patient community is simply a similar patient sharing medication and treatment experience, but with the aid of AI these tools can also quantify the patient's disease experience and dig out more value of patient data.
Of course, this is different from the autonomous accumulation of patients, such as relying on QQ group, Baidu Post Bar. These integrated post-private patient data can be shared with health care providers, researchers and pharmaceutical companies, medical device companies, and insurance companies. A large amount of patient data can help these companies improve their business and provide accurate decision support.
For this business model, we will feel so familiar, because a large number of social platforms in China also have similar platforms and communities for patients, but it has not become a big climate, not only has not become specialized and centralized, information is mixed, and privacy and Data security is not guaranteed.
The biggest difference is that in the spontaneously organized community of patients, the patients are still weak, they are asking for help, and the patients share the empirical content based on self-perception.
The most advanced online patient community is empowering patients, quantifying patients' disease sensations, structuring and standardizing patient data into medical-level evidence, and changing the way patients interact with medical organizations.
Policy norms and advancement
The arterial network found that many online communities of foreign heads, such as PatientsLikeMe, have collaborated with pharmaceutical companies and patient data has been used by the FDA for medical-grade evidence.
The rapid development of the online patient community benefits first from the regulation and promotion of the regulatory layer.
The National Medical Information Technology Coordination Office (ONC) defines Patient-gen-erated health data (PGHD) as: Helping to solve health problems, created, recorded, by patients or their designated personnel. Health care data collected or inferred. In some national or local medical institutions or groups, PGHD has become an integral part of the Electronic Health Record (EHR) and has been systematically used. Technology and standards organizations have also conducted a forward-looking exploration of PGHD's data infrastructure.
PatientsLikeMe also worked with the FDA on August 23 this year to use data submitted by Patient Resources in PatientsLikeMe in a study published by the FDA. This can be seen as a different source of FDA's exploration of evidence-level health data.
PatientsLikeMe is able to meet this condition because it currently uses the Medical Dictionary Regulatory Activity (MedDRA) for data collection, which is the FDA's Adverse Event Reporting (AER) coding framework. This ensures that the data generated by the patient is available to the researcher. This is also the difference between a specialized patient community and a general patient gathering area. The relevant reports of PatientsLikeMe and FDA have been released.
The FDA has recently been exploring how real-world data from diverse sources and diverse patient feedback should be valued. To this end, the FDA has also established the Office of Patient Affairs to more effectively accept input from patients.
Second, the patient community develops because it stands in the node position of the medical digital transformation value system. It is the intersection of big data outbreaks, consumerization of healthcare services, personalized medicine and precision medicine .
It is estimated that one out of every 20 Google searches involves health issues. According to a report by Accenture, 68% of patients spend a few hours a day online, and they prefer pharmaceutical companies to access them through digital channels to provide health management services. A survey of 1,000 doctors from Google also showed that 73% of doctors said they relied on the Internet to acquire knowledge about clinical information and to eliminate their doubts.
In the era of digitalization and consumer centralization, consumers demand more transparent medical treatment processes. In addition to doctors' recommendations, patients will also go to relevant communities to find relevant information to support doctors' prescriptions. In the era of consumer-centricity, shopping products viewing reviews have become accustomed to. The data that the patient voluntarily uploaded is the drug company's goods, which is also the value of the patient data. As early as 2016, the patient medication review provided by Walgreens added data from PatientsLikeMe.
Patients are in great demand for the symmetry of medical information. But few platforms are able to implement a user-centric security platform. At the same time, it must be both authoritative and reliable. In addition, the specialized patient community must also address the stickiness of users without relying on doctor resources.
The arterial network counts the major online patient platforms at home and abroad:
Pharmacy + patient community = the least amount of money to do the most
The cooperation between pharmaceutical companies and specialized patient communities is not only advertising marketing, but also cooperation in drug discovery based on large amounts of data, patient recruitment in clinical trials, and monitoring of adverse drug reactions.
In particular, the recruitment of patients in clinical trials has now proven to be a business model that can be walked through. A professional patient community can quickly match the right patient and respond quickly. A study by Warwick University showed that it took nearly six months for general health organizations to recruit 250 people in the traditional way, while an online community spent only 48 hours.
A report from CBinsight shows that in the United States, more than 1.7 million people were diagnosed with cancer for the first time in 2018. At the same time, more than 10,000 clinical trials will each require the recruitment of thousands of new patients for testing experimental cancer drugs that may save lives. However, less than 5% of cancer patients eventually participated in the trial.
The recruitment of domestic patients is also not better. According to the FDA's 2015-2016 Clinical Trial Report, the US population accounts for about 4% of the world's population and the clinical trials reach 40,835. China's population accounts for about 20% of the world's population, and the number of people involved in clinical trials is only 3,841.
The online patient community is able to accelerate the recruitment of clinical trial patients, such as PatientsLikeMe, which has launched a dedicated clinical trial patient recruitment function. PatientsLikeMe has built the online tool Open Research Exchange, which quickly maps patient-based tests to establish a link between symptoms and disease.
Antidote Match provides technology-based clinical trial matching services for more than 250 patient communities and more than 15 million patients.
The latest application in the discovery of new drugs is in rare diseases. The decentralization of the online center brings about technological democracy, and everyone has the same voice channel. For rare diseases, the rare disease group that is submerged in the population can get vocal channels and space that were not available in the past. The treatment and research of rare diseases in the past have faced many challenges. First, there are very few patients with rare diseases, and they are scattered around the world. Uncommon diseases require expert treatment, but many patients simply cannot see the experts. The diagnosis of rare diseases also takes years, and the number of patients is small and scattered around the world, and large-scale clinical trials are not possible. Pharmaceutical companies do not see sufficient economic benefits in the development of "orphan drugs."
Rare diseases are one of the biggest challenges facing human medicine, and nearly 7,000 rare diseases are currently known. There are more than 10 million rare patients in China, but less than 40% of patients are diagnosed and the average diagnosis is 5 years. PatientsLikeMe has started working with Shire Pharmaceuticals to conduct research on the treatment of rare diseases.
Establishing regular contact with patients and caregivers has been a challenge for researchers studying rare diseases. Philip Wicks, head of research and development at Shire Pharmaceuticals, said in a statement: "We usually study patients at a specific point in time. These patients may be far away. Our collaboration with PatientsLikeMe will enable Shire to understand the environment. How it affects the disease and the ability to integrate all the information on one platform. Our goal is to gather a more complete patient and caregiver experience that may lead to new, more patient-centered treatments. development of."
In these areas, pharmaceutical companies have also tried, and Novartis launched a social application for chronic urticaria in 2016. After the patient logs in and enters the appropriate symptoms, the application can anonymously match patients with similar symptoms. Patients with similar symptoms can share life experiences and deal with emergencies.
Currently, PatientsLikeMe cooperates with the most pharmaceutical companies, including Roche's Tektronix, Merck, AstraZeneca and so on.
Data, cash flow mode, determines how far the patient community can go
Patient data is the infrastructure in intelligent medicine, and the patient community wants to gain a foothold. The most important thing is not how to have a large number of patients, but how to master all patient data entries and open up patient data processes.
The entrance now looks a bit crowded, and wearables companies, insurance companies, and Internet companies are constantly trying to make mistakes. For example, WeChat and WebMed work together, and insurance companies use wearable devices to encourage users to exercise. The online patient community needs to not only have data uploaded by patients, but also obtain stereoscopic, complete, and dynamic data from users, and explore a series of data portals such as Internet of Things, genetic testing, wearable devices, and sensors.
Taking PatientsLikeMe as an example, it is currently looking for a richer source of data, such as data from sensors and wearables. It is also conducting pilot projects to collect blood and DNA samples from some members. In partnership with iCarbonX (Carbon Cloud Intelligence), PatientsLikeMe will have a way to expand projects involving gene sequencing .
The partner is a member of the iCarbonX Digital Life Alliance. The alliance, comprised of technology and application companies, works with iCarbonX to combine biological and patient-generated data with artificial intelligence to improve understanding and insight into behavioral and environmental factors that may accelerate or mitigate disease in life.
After the patient community has laid the foundation for the user base and extended the data channel, the business model will be able to work. The patient community has a lot of data that can be easily realized through marketing and advertising, but it also hurts the fundamental trust of the patient community. In foreign countries, the patient community has created more models.
With more than $127 million in funding, PatientsLikeMe has come out of a professional path that does not compromise advertising. The PatientsLikeMe website rejects advertisements. The main profit method is to cooperate with pharmaceutical companies and research institutions to use the medical data collected on the platform as their own database, to sell access rights and to make profits.
PatientsLikeMe's rival HealthUnlocked also chose a similar business model, the patient community is free and non-profit. HealthUnlocked's approach to value realization provides precise solutions for pharmaceutical companies, industry and health organizations through AI and technology. In addition to providing clinical trial matching and industry insights for pharmaceutical companies, it also provides a HER platform for hospitals to integrate more patient data. Antidote is focused on clinical trial matching.
The domestic market still needs time to settle
The arterial network found that the main patient community in China had the same disease and community and chronic disease. In recent years, some communities in the field of vertical diseases have also emerged. In general, the development of the community of patients is still in the exploratory stage, and it takes time to precipitate. The domestic patient community profit model tends to provide patients with accurate medical resources. But in this direction, there are already many platforms with hospital and doctor resources that have a competitive advantage, and patient data is still in a weak position.
From the perspective of several Internet patient communities with long operating hours in China, the main operational characteristics are as follows:
1, single disease cut. Verticalized community operations for different diseases. The communication between patients with the same disease is more solid and will have long-term stickiness. For different diseases, different patients are aggregated and easy to focus.
2. Psychological intervention. Psychological construction is very active for patients, and almost all patients have different levels of psychological needs. Taking an Internet patient community as an example, the agency has set up a psychological intervention forum to introduce doctors' online lectures to help patients overcome psychological barriers. At the same time, through the way of the patient's heart and mind notes, encourage patients to share their mental journey.
3. Integrate effective information. The information shared by the patient community, the data source is extensive and targeted, and access to doctor resources, assisted by professional doctors to help patients find information that suits their situation.
The development of foreign patient communities can provide two references for domestic data mining:
The first is to solve the structural problems of patient data and quantify the patient prevention and post-hospital data.
The second is to expand the ecosystem of partners. If the patient community has more partners and data sources, it can enhance authority and professionalism, form a data loop, and cut into more application scenarios for patients.
Attachment: Introduction of foreign companies
PatientsLikeMe
PatientsLikeMe is an online health data sharing platform. PatientsLikeMe creates new knowledge by sharing the patient's experience to map the real world of the disease. When patients communicate with each other to improve their outcomes, the data is provided to help researchers understand the role of these diseases in the real world and accelerate the discovery of new, more effective treatments.
PatientsLikeMe primarily builds online communities for chronically ill patients. As of January 2017, it already has more than 500,000 patients and covers more than 2,700 diseases. Patients share treatment experience with each other in PatientsLikeMe, and there are also professional medical professionals in the community.
Michael Evers, executive vice president of marketing, technology and operations at PatientsLikeMe, said in a statement: "Whether you are just starting a new drug treatment, you are still studying alternative therapies and knowing what other people have experienced is priceless." "We are very pleased that our members help more people understand their choices and expectations so that everyone can make more informed choices about their health."
HealthUnlocked
HealthUnlocked is an intelligent self-service platform that gathers people's medical experience information so that patients can share medical experience safely.
In this platform, patient information can be integrated into a large amount of useful data, and HealthUnlocked processes the information and translates it into useful knowledge, ensuring security and privacy. Like PatientsLikeMe, HealthUnlocked offers a range of digital healthcare solutions for healthcare providers, pharmaceutical and research organizations.
MyHealthTeams
MyHealthTeams is a San Francisco-based company that builds an in-depth social network for people with chronic conditions. MyHealthTeams makes it easy for participants to find and connect with them to understand their everyday voices.
As of 2017, MyHealthTeams has established and operated 24 social networks to serve chronically ill patients in eight countries.
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