Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > The Evolution of the ‘e-Patient’ > Pre-history of the e-Patient Movement
- Look at what it all means for healthcare patients and consumers.
- e-Patients: individuals who are equipped, enabled, empowered, and engaged in their health and health care decisions (provisional definition by Doctor Tom Ferguson, a pioneer and founding figure in this field).
- There’s also the E of email and eHealth i.e. internet and the World Wide Web sources and platforms for information and connection that help foster much of the empowerment and engagement that e-Patients now have within their reach.
- Provide important context for the e-patients movement – HIV/AIDS activism in the late 1980s and early 1990s.
- When AIDS entered national consciousness in the late 1980s, there were lots of fear, uncertainty, and misinformation about how HIV transmission.
- Media – this was pre-internet so most people got their information from print media and mass media – played an important role in shaping public awareness and thus also became a target for activists who felt the perception about AIDS was shaped by vested interests.
- Many AIDS activist groups, in particular Act Up, had a strategy of civil disobedience in locations and on dates that would get mass media attention e.g. protest at the New York City General Post Office near closing time on Tax Day, April 15th 1987.
- This group was angry that patients’ and caregivers’ needs were not met, drugs were taking too long to be approved, too expensive once approved, and that there was too little funding to help people understand HIV/AIDs.
- In addition to organising events that would be covered by the media, the group also filmed their own videos.
- As a result of a 1989 protest at the New York Stock Exchange, a drug manufacturer reduced the price of an important AIDS drug, AZT, by thousands of dollars.
- Other protests:
- shaped policies at CDC and NIH;
- led to more funding for HIV/AIDS research;
- helped change social norms around treatment of HIV-positive patients;
- Pre-internet, AIDS activists achieved a lot, and the e-patients movement is part of this powerful historical legacy – it is same key idea that patients’ voices are important and need to be heard and respected that is at the heart of the movement.
- The e-patients movement is disruptive, challenging some long-held orthodoxies and power structures in medicine.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > The Evolution of the ‘e-Patient’ > Evolution of the e-Patient in the Internet Era
- Dr Tom Ferguson and his colleagues in the e-Patient working group published an important white paper called “e-Patients: How They Can Help Us Heal Health Care”, where “e-patients” is used to describe individuals who are equipped, enabled, empowered, and engaged in their health and health care decisions.
- It does not identify the role of web-based resources, social media, remote sensors, wearable technologies, or smartphones but digital technologies clearly play a major role.
- The Society for Participatory Medicine makes it clear that digital platforms can serve as powerful communication tools connecting patients to providers, and to each other
- You can look at patients on Crohnology, and even at healthit.gov, the home page for health IT for the US government, to find stories about patients working together to improve their health.
- Three phases:
- Early days of the internet: patients used it to access information from read-only files; it was a huge step forward from no access to other patients or medical information.
- Second phase: evolved along with the web, as the social web enabled the beginnings of peer-to-peer health care.
- Third phase: as the web matured and expanded from being an open repository of information to a site of communication and exchange, patients found each other and built robust social networks of tremendous value to the participants.
- Fourth phase: do-it-yourself content creation and peer-to-peer healthcare as e-patients are:
- communicating with each other;
- building databases online;
- conducting their own scientific experiments;
- helping to shape the era of participatory patient-centered medicine.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > The Evolution of the ‘e-Patient’ > Evolution of the e-Patient in the Big Data Era
- Patients and their data: it is about empowering the patient and the technological ability to measure what is happening inside of their bodies.
- This is the result of three converging developments/trends: mobile technology, sensors, and big data.
- Inexpensive sensors feedback information to our phones as we work and as we move (sometimes known as ambient monitoring).
- Patients also record data on their mobile devices in (i.e. active monitoring).
- Examples:
- Patients can measure their own sleep patterns, heart rate etc.
- Caregivers can keep a close eye on those they care for e.g. monitoring babies’ breathing and sleeping positions.
- Self-measuring and tracking has led to a social movement called the quantified self – people who
- observe and measure all aspects of their lives in great detail;
- analyze the data collected;
- conduct self-experiments;
- improving their lives as a result.
- The large amounts of data are creating challenges for the patients and doctors.
- Patients are realising that data and information are not the same as knowledge i.e. what do/should they do with the data and information?
- The health care ecosystem is not prepared to deal with what patients measure themselves e.g. patients expect the doctor to know what to make of their sleep patterns or their variations in heart rate.
- Technology has moved ahead of how doctors are trained; in fact it may be the patients who are leading the doctors to change (in fact, the e-patient white paper suggests that when it comes to disruptive technologies, established experts like doctors may be the least capable of guiding us).
- Hence, companies exist that allow patients to put their information into massive collections with other patients so that observational data can be collected e.g. PatientsLikeMe.
- Since its launch in 2004, PatientsLikeMe has been working to:
- speeding up the process of bringing new therapies/drugs to market by connecting its disease communities and all that data the patients are collecting;
- allowing patients to learn from patterns of other patients;
- making it possible for individual patients to make their records available for medical researchers.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > e-Patients and their Healthcare > Personalized Medicine for Patients
- In January of 2015, President Barack Obama announced a new initiative on precision medicine.
- Precision medicine: a type of care where medical problems can be precisely diagnosed and then treated with predictable, evidence-based treatments.
- 23andMe was the first direct-to-consumer genomics company, it launched in 2007 with the $1,000 saliva test and the cost has dropped to $99.
- It represents the democratization of genetic information but putting information about our genome into the hands of consumers (individual empowerment and the ability to make choices about one’s future).
- It is direct-to-consumer genomics, disrupting the traditional top-down flow of information from physicians, similar to the introduction of home pregnancy tests in the 1970s, which put personal health information into the hands of young women.
- In November of 2013, the Food and Drug Administration cited 23andMe for performing what it considered medical testing without its approval and without physician oversight; it wanted assurance that the company had validated what it provides for their customers.
- Until 23andMe could demonstrate that their genetic testing would inflict no harm to patients, it was ordered to stop marketing its genetic testing kits.
- The American Medical Association has lobbied the US government that consumers should only have access to their genome when supervised by a doctor.
- An important question: do doctors have appropriate background and training to help patients understand their own personal genomic reports?
- FDA’s and AMA’s attempts to control what patients know and understand about their genetic info represents a new age form of paternalism.
- Keep in mind though that data and information and knowledge about what to do are not the same.
- In addition, not all patients want the type of empowerment promised by personal genomic information.
- A recent project undertaken at the Brigham and Women’s Hospital in Boston offers gene sequencing for both healthy and sick newborn babies.
- It is voluntary, but some parents are not comfortable knowing everything about their child, and how this information might be used raises new ethical questions e.g. 23andMe has filed a patent for a system that helps prospective parents choose the traits of their offspring (the patent, titled Gamete Donor Selection Based on Genetic Calculation, takes selected traits and calculate likely phenotypic outcomes based on the customer’s sperm and egg).
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > e-Patients and their Healthcare > Rise of mHealth and the ‘No Smartphone” Patient
- According to the CDC, 2/3 of U.S. adults are overweight or obese and half of all U.S. adults are living with a chronic condition such as hypertension, diabetes, heart conditions, lung conditions, and cancer.
- According to the 2013 study Tracking for Heath from the Pew Internet and American Life Project written by Susannah Fox and Maeve Duggan, self-monitoring has been shown to improve health outcomes, particularly among people trying to control their weight, blood pressure, and blood sugar.
- Those with chronic conditions are significantly more likely to track a health indicator or symptom than those without.
- Despite the rise of the e-Patient, there continues to be serious health disparities and digital health tools can make a big difference, but only if they are deliberately designed and employed to do so:
- In an article in Wired magazine called “Wearables are Totally Failing the People Who Need Them Most”, it reported that companies should stop focusing on activity trackers and instead tackle the red tape and regulatory challenges of the health care industry.
- These include understanding the health law infrastructure, following FDA rules, learning how HIPAA works, and ensuring connection to a patient’s electronic health records.
- The FDA is working on policies and processes that will distinguish between digital health tools, including apps, that like new drugs will require a lengthy and expensive FDA approval process, and those that do not.
- For digital health to be a truly democratizing, there must be design health innovations for the most vulnerable populations.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > e-Patients and their Healthcare > Patient-driven Communication with Doctors
- Communication was limited to the visit to the physician; now we can communicate privately, and socially; new channels take dialogue and communication outside of the traditional venues of care.
- Email: advocates claim that it is accessible and builds trust, but detractors claim the human encounter is more subtle than what an email can deliver.
- Social media: allows doctors and patients to engage in more public social spaces; it is usually about the exchange of information and typically never involves patient-specific exchanges.
- One advantage: doctors and patients can see and understand each other’s daily issues e.g. from Twitter feeds and blogs.
- Organized engagements on Twitter is one way doctors and patients to engage with each other.
- Text messaging: not a HIPAA compliant form of communication, but studies show about 40% of physicians have used SMS for the exchange of health information with other doctors.
- There are more secure applications but text messaging fits perfectly with the workflow of physicians and patients.
- Electronic health records: have significantly improved doctor-patient communication in a secure setting.
- Compliance with privacy law remains a key requirement for all new forms of communication e.g. email might not be encrypted and text messaging is not compliant.
- As we move towards value-based care, these newer forms of communication will likely play a larger role in patient care and disease management.
- An issue is “time creep” where multiple communication channels and technologies give rise to the expectation is that doctors will be there 24×7 to participate.
- Both patients and doctors have to take responsibility of how and where we communicate.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > Expert Interview: Podcast with Dr. Roni Zeiger > Podcast with Dr. Roni Zeiger
- There are two very divergent perspectives on e-Patients access to information:
- This is awesome.
- Oh crap, now all the patients have access to all this information which they often won’t understand, which sometimes will cause us to waste precious time talking about something that’s irrelevant and may even cause harm if they make decisions or take recommendations from untrained people or untrustworthy sources.
- Patients are going to be able to try to answer a bunch of questions before I even see them; they will have therefore, more sophisticated questions that we can drill into – what’s happened over time is patients have developed a more mature relationship with their information; they realize that I play a role and this information plays a role.
- If doctors know that all those people have access to information, there is pressure for ensure they are at the top of their game.
- Doctors have to become good at collaborating with patients to solve the problem, and to figure out the ways they want to solve the problem (what are their strengths, fears, and values?) i.e. not just knowledgeable about the medicine, but even more knowledgeable about collaborating with different kinds of people to solve problems with them and for them.
Week 3: How Have Patients (and Consumers) Changed in the Digital Age? > Expert Interview: Dr. David Wetter > Interview with Dr. David Wetter
- David Wetter is a Professor and Elma W. Schneider Chair of Psychology at Rice University.
- His group is studying mobile on-body sensors to help people make behavior changes (e.g. in diet, physical activity, quitting smoking etc).
- The sensors collect critical information:
- about the person;
- about the environment factors that can influence behavior.
- Other sensors can detect tobacco and cocaine use – whether the person has actually used as well as physiological measures that are indicative of self-regulatory capacity often thought of as a muscle where if you use it a lot and don’t give it adequate time to rest, you can run out of self-regulatory capacity, making you unable to cope with a trigger to use tobacco or cocaine).
- Sensors can also detect stress and stress is behind many “bad” behaviors.
- Another technology: glasses that can be trained to recognize addictive stimuli e.g. alcohol ad on TV, cigarettes in the environment etc.
- Sensors can also tell in real time if you’re engaging in conversation that is stressful e.g. tones, linguistic analysis etc
- The combination of measures gives a risk profile of the person to things going on in their environment.
- An interesting example: smokers’ cravings go up the the closer they get to the tobacco outlet that they usually buy tobacco from in their neighborhood.
- With nano sensors, we can now detect what is in the blood e.g. whether insulin is needed or not and prompt the person accordingly.
- For chronic diseases, sensors could work with the person in real time where it usually does not need any clinician intervention, but when it hits a critical threshold, the sensors contact the physicians. One could even create a infrastructure where it does not have to be the doctor who actually intervenes (it could be AI etc).
- There are two categories for medical devices:
- prototypes that scientists are developing which are vigorously tested;
- devices like a smart phone/watch or a Fitbit to provide the information that would help manage health.
- These devices raise interesting questions about payment and ownership and maintenance.
- A potential divide:
- Typically for medical advances, the privileged have access first and the underserved always are the last to benefit, sometimes many decades later.
- We will have to make a very special effort to make these advances available to those in underserved populations as they usually bear the brunt of chronic disease right now (e.g. for obesity and diabetes).
Week 3: How Have Patients (and Consumers) Changed in the Digital Age?