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Patient Centered Care | Unit 3a Lecture
- 1. Patient-Centered Care Activated Patients Lecture a: Do-It-Yourself Medicine This material (Comp 25 Unit 3) was developed by the University of Alabama at Birmingham, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0007. This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org.
- 2. Activated Patients Learning Objectives • Bring a global perspective to Do-It-Yourself (DIY) medicine/describe factors influencing expansion • Discuss the impact of DIY medicine on both clinical practice and clinical research • Discuss the potential promise and peril of the changes that DIY medicine will bring to healthcare • Discuss the role of the Quantified Self & mobile health applications in patient-centered care 2
- 4. Do-It-Yourself (DIY) Medicine 2 • Increasingly common due to: – Availability of online or remote diagnostic and treatment methods – More sophisticated consumer health products – Digital health/mobile health medical apps – Community based support/education groups – Digital clinical research tools/ Crowdsourcing 4
- 5. Online or Remote Diagnostic and Treatment Modalities • Telemedicine – Diagnose – Monitor – Treat • Telehealth – Improve self-care – Education – Support systems 5
- 6. Remote Diagnosis and Treatment Example • HealthTap – Virtual concierge practice o Patients communicate directly to physicians – HealthTap U o Medical student resource – RateRx o Physician ratings of drug effectiveness – Curbside Consult o Online forum 6
- 7. Telehealth Examples • Partners HealthCare congestive heart failure study: – In-home monitoring with use of decision support – Targeted nurse interventions – 3 to 4 nurses per 250 patients – Hospital readmissions reduced 44% – $10 million in savings over 6 years 7
- 8. Telehealth Examples (2) • Veterans Administration Care Coordination/ Home Telehealth program: – Participants with 6 chronic diseases o 17,025 initially o 120,000 by 2012 – High patient satisfaction – 25% decrease in bed days – 19% decrease in hospital admissions – Savings of almost $2,000 8
- 9. Consumer Health Products • 23andMe – Consumer driven genetic service o Meets FDA clinical and scientific standards – Provides services directly to patients o Carrier status report o Ability to compare reports with other users o Allows participation in research 9
- 10. Connected Health • Digital health and mobile health – Accessing online information – Software and wearable sensor technology o Track and achieve healthcare goals • Increasing rates of adoption – Two-thirds of Americans use smartphones – 2018 sales estimate - $50 billion – Underrepresented populations Source: (www.rockhealth.com) 10
- 11. Mobile Health Apps • Online health information - WebMD • Online provider scheduling/ratings - ZocDoc • Mobile health tracking - MyFitnessPal • Wearables/sensors – FitBit, Jawbone, etc. 11
- 12. Community Based Support & Education Groups • Patient Communities • Support • Education • Biobanks • Clinical data repositories 12
- 13. Patient Community Examples • PatientsLikeMe (PLM) • Creaky Joints & ArthritisPower1 Patient Powered Research Network (PPRN) • CureTogether • PXE International • Mayo Clinic Database and Biobank – Spontaneous Coronary Artery Dissection (SCAD) Source: (The author has worked with CreakyJoints and leads development of the ArthritisPower app as part of a PCORI funded PPRN.) 13
- 14. Digital Clinical Research Tools & Crowdsourcing • Fair Access to Science and Technology Research (FASTR) Act • Public data repositories – Developed by universities, healthcare centers, pharmaceutical companies and patients – Aims to spur scientific advances • Public data commons – Collaborative research – New methods of data analysis 14
- 15. Examples of Data Repositories • Personal Genome Project (Harvard, 2005) • Patient-Centered Clinical Research Network (PCORnet) o Formed in 2010 o Multiple aims Streamline clinical trials Empower patients • PatientsLikeMe (PLM) Source: (NIH 2013) 15
- 16. DIY Medicine – Benefits • Increased access to data for patients and researchers • Collaborative crowd-sourced discovery • Empowered patients • Increased funding for research • Increased benefits to patients from research 16
- 17. DIY Medicine – Risks • Healthcare costs – May decrease but may also increase • Integration of new sources of data into healthcare processes • Research – Crowdsourced research needs new standards 17
- 18. Activated Patients lecture a – Summary • Trends – Availability of diagnostic & treatment methods – More sophisticated consumer health products – Digital health/mobile health medical apps – Community based support/education groups – Digital clinical research tools & crowdsourcing • Outcomes – Empowered, knowledgeable consumers – Effecting change in healthcare 18
- 19. Activated Patients References – Lecture a References 23andMe Research. (n.d.). Retrieved April 05, 2016, from http://www.23andme.com/research/ Akst, J. (2013, March 1). Do it yourself medicine. Retrieved from http://www.the-scientist.com/ Akst, J. (2014, May 1). Sharing the wealth. Retrieved from http://www.the-scientist.com/ Jamie Heywood: Let's Change the World. (2014). Retrieved April 05, 2016, from https://diymedicine.wordpress.com/2014/10/13/jamie-heywood-lets-change-the-world/ Kulshreshtha, A., Kvedar, J., Goyal, A., Halpern, E. F., & Watson, A. J. (2010, May 19). Use of Remote Monitoring to Improve Outcomes in Patients with Heart Failure: A Pilot Trial. Retrieved April 05, 2016, from http://www.hindawi.com/journals/ijta/2010/870959/ Kvedar, J., Coye, M. J., & Everett, W. (2014, February). Connected health: A review of technologies and strategies to improved patient care with telemedicine and telehealth. Retrieved April 05, 2016, from http://content.healthaffairs.org/content/33/2/194.full Meyers, A. The perils of DIY medicine. Physician’s Money Digest, 11 February 2011. http://www.hcplive.com/ (Accessed 10 January 2016) MyFitnessPal. Retrieved April 05, 2016, from https://www.myfitnesspal.com/ 19
- 20. Activated Patients References 2 – Lecture a References PCORnet: Meeting Clinical Trials' Need for Speed. (2013, December 2). Retrieved April 05, 2016, from http://directorsblog.nih.gov/2013/12/17/pcornet-meeting-clinical-trials-need-for-speed/ PXE International. Retrieved April 05, 2016, from https://www.pxe.org/about-us/history-of-pxe- international#conclusion Sarasohn-Kahn, J. (2015, January 28). Your Home Is Your DIY Medical Home. Retrieved April 05, 2016, from http://www.huffingtonpost.com/jane-sarasohnkahn/your-home-is-your-diy- med_1_b_6500746.html The smarter way to find the best treatments. (n.d.). Retrieved April 05, 2016, from http://curetogether.com/ Top health industry trends and issues 2016. (n.d.). Retrieved April 05, 2016, from http://www.pwc.com/us/en/health-industries/top-health-industry-issues.html Images Slide 3: Patient to Self-Provider. UAB. 20
- 21. Patient-Centered Care Activated Patients Lecture a Do-It-Yourself Medicine This material was developed by The University of Alabama at Birmingham, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0007. 21
Hinweis der Redaktion
- Welcome to Patient-Centered Care, Activated Patients. This is Lecture a, Do-It-Yourself Medicine. In recent years, there have been shifts in the relationship between patients and physicians. Patients have become more active and involved in their own health. This unit discusses the concepts of what has been referred to as Do It Yourself Medicine, the Quantified Self, and mHealth as examples of how activated patients are beginning to manage their own health.
- The objectives for this unit, Activated Patients, are to: Bring a global perspective to Do-It-Yourself (DIY) medicine and describe the factors influencing its expansion Discuss the impact of DIY medicine on both clinical practice and clinical research Discuss the potential promise and peril of the changes that DIY medicine will bring to healthcare Discuss the role of the Quantified Self and mobile health applications in patient-centered care
- The term “patient” has changed over time as different conceptions of the physician-patient relationship have evolved. Current language speaks of healthcare providers, for example who interact with healthcare consumers. Do It Yourself Medicine represents another stage in the transformation of patients to patient-customers, to patient-clients to patient-consumers to patient self-providers. Ultimately, it is medicine where patients research, select, acquire and institute therapy or treatment and log their own output measures autonomously.
- DIY Medicine is increasingly common due to multiple trends including: The availability of online diagnostics; More sophisticated consumer health products Digital health or mobile health medical apps Community based support and education groups Digital clinical research tools and Crowdsourcing We will look at each trend in more depth and present examples of how technology is affecting each area. What is common among these different trends is that they all involve some degree of shifting responsibility for a patients’ health care away from the physician and increasingly to patients themselves. Let’s start by discussing some of the approaches to healthcare at a distance.
- Remote diagnostic and treatment modalities have led to a change in the location of care. Just as ambulatory medicine became more and more based on face to face visits in the physician’s office rather than the patient’s home, there are now technologies that are changing the nature of the face-to face visits as well as the location. Telemedicine, as defined by the industry journal Health Affairs, is the “use of technologies to remotely diagnose, monitor and treat patients. ”Telehealth is the application of technologies to help patients manage their own illnesses through improved self-care and access to education and support systems.”
- While traditional telemedicine has been similar to face to face medicine except that the visit was done at a distance, other approaches are more similar to social media applications. HealthTap is a web-hosted healthcare platform and an example of the increasing sophistication of telemedicine. Using HealthTap, patients can communicate with physicians directly – a virtual concierge (pronounced con-see-airzh) practice – via text or video chat from anywhere in the world. Other unique elements of the platform include HealthTap U where medical students can craft answers to patient questions and receive feedback from providers. Another part of HealthTap is called RateRx (pronounce Rate-R-X). RateRx asks doctors to rate the “clinical effectiveness” of a drug from 1-5 stars based on their clinical experience. Another feature is Curbside Consult, which allows a physician to broadcast a question to other physicians on the network. These new approaches have broadened the traditional physician-patient relationship, as well as the collegial relationships between health care providers.
- Here are some examples across the different domains of digital health. The Partners HealthCare congestive heart failure study consisted of in home monitoring of weight, blood pressure, heart rate, pulse oximetry. The data was uploaded daily to a central database where decision support software identified those patients needing attention. Nurses thus could target their interventions. Hospital readmissions were reduced by forty-four percent versus the usual method of care. Three to four nurses cared for a panel of 250 patients. Compare that with a certified home care agency where a nurse would typically care for four to six patients daily. The program generated $10 million in savings over a 6 year period.
- Another example is what is being done at the VA (pronounced V-A). The Veteran’s Administration Care Coordination/Home Telehealth program initially covered 17,025 participants across 6 chronic diseases, among them diabetes and depression. This program continues to grow, with almost 120,000 veterans participating by 2012. There was high patient satisfaction reported, and a 25% decrease of bed days of care and a 19% decrease of hospital admissions versus the usual care. There was also a savings of almost 2,000 dollars per patient.
- Increasingly, health services that were traditionally accessible only to clinicians are targeted and directly available to consumers. 23andMe (pronounced 23 and me) is a consumer driven genetic service that provides reports that are stated to meet FDA standards for being clinically and scientifically valid. One example of these reports is the carrier status report, which allows a client to see if they carry one genetic variant associated with an illness. This would allow parents to understand their odds of transmission of specific illnesses to their children. 23andMe also allows clients to compare their results with other users, such as family members. Users are given the opportunity to participate in research by answering online surveys and agreeing to share their genomic data. Services such as 23andMe raise important challenges in the typical clinician patient relationship – how is the information interpreted/used by clinicians? Is it reliable enough for clinicians to make conclusions from it and how do they bill for their time interpreting data from such services? Where should the data reside? What is the patient’s role in interpreting the data, requesting action on its findings, etc.? New technologies and newly empowered patients raise challenges to the conventional dynamics of a clinician/patient relationship that are as of yet unaddressed.
- There are many domains of digital health, from accessing online information to the utilization of software and wearable sensor technology to help a user track and achieve healthcare goals. These are commonly referred to as Telehealth or mHealth over mobile devices and both may be thought of as “connected health”. Use of connected health is on the rise. It is estimated that two thirds of Americans currently own or use a smart phone. Annual sales of wearable devices is expected to increase by more than $50 billion by 2018. However, some populations are underrepresented. Only 18% of older adults and 44% of Blacks or Hispanics use smartphones. Over time, it is likely that more of the underrepresented groups will be using these devices.
- Using online health information sites such as WebMD, patients can investigate symptoms and work toward diagnostic and therapeutic impressions. Online health reviews like ZocDoc allow patients to search for providers by specialty, zip code or even accepted insurance, and schedule appointments. Patients can also review and add provider ratings. Mobile health tracking websites and apps like MyFitnessPal track caloric consumption and excercise on the go to help with weight management. Many such applications exist and involve and motivate users to achieve their health goals. Wearable sensors such as the FitBit family of devices and the Jawbone, are just some of the many available consumer level activity sensors to help users monitor their activity, sleep and other personal health goals. Entries into this market are frequent and are expanding rapidly.
- Community based support groups and community education groups exist across the spectrum of DIY medicine, focusing on all aspects of care and research. These groups are playing critical roles in the DIY medicine movement, galvanizing interest and support from both the public and medical communities. These groups have also found financial support for enhancing the available research tools such as biobanks and clinical data repositories and consumer information across many conditions.
- Patient communities have the potential to drive research efforts, challenging the research community to bring advances to patients particularly in the case of lethal illnesses such as ALS. Patients Like Me allows for condition specific tracking of health and symptoms as well as connecting individuals with the same illness and providing the opportunity to participate in research. A 2011 study in Nature Biotechnology used data from one of these communities and found that lithium therapy did not impact progression of ALS. A collaboration between the rheumatoid disease patient community known as Creaky Joints and the University of Alabama at Birmingham resulted in the Creaky Joints & Arthritis Power Patient Powered Research Network that is building tools for patients to track and learn more about their conditions and empowering members to participate in research. CureTogether provides access to millions of ratings comparing the real-world performance of treatments across a growing number of conditions. In January of 2016, there were 637 conditions included in its database. These ratings are entered by individuals currently under treatment, sharing real data on how their illness is being affected by different treatments. Pseudoxanthoma (pronounced sudo-zanthoma) elasticum or PXE (pronounced P-X-E) is a genetic disease. PXE International has raised funds to establish a research registry, created blood and tissue banks and has spurred peer-reviewed research into this condition. The Mayo Clinic created a database and biobank of blood specimens of patients with Spontaneous Coronary Artery Dissection and their relatives using social media tools like Facebook, Twitter and YouTube.
- There are increasing calls that federally funded research data be “publicly accessible to search, retrieve, and analyze” both in the US and abroad. In 2013 and 2015, the Fair Access to Science and Technology Research or FASTR (pronounced faster) Act was introduced in the US congress. The European Union has also called for its member states to pass policies to ensure digital accessibility for research data funded publically. This has led to more interest in digital data repositories. There are a growing number of publically available digital data repositories driven by universities, health care centers, Big Pharma and patients themselves. Many point to the need to share data to spur scientific advances, sharing that may be hampered by traditional research processes. Other efforts go beyond static data repositories and aim to create a “data commons” where researchers can collaboratively develop new and creative ways to analyze available data. Populating these repositories often relies on social media, crowdsourcing and other non-traditional means of patient recruitment
- Harvard’s Personal Genome Project invites willing participants to share and donate their genome and health data for research. The Patient Centered Clinical Research Network, PCORnet (pronounced pih-CORE-net) consists of clinical data research networks located in health centers, hospitals, etc. and patient powered research networks such as patient advocacy groups. PCORnet is funded by the Patient Centered Clinical Outcomes Research Institute or PCORI (pronounced pick-corry), which was established as part of the 2010 Affordable Care Act. As described by NIH Director Francis Collins, PCORnet was established by PCORI to, “…provide unprecedented opportunity to streamline clinical trials, empower patients, and build a solid foundation for personalized medicine.” PatientsLikeMe has over 380,000 members that track and share health data to help researchers, other patients, pharmaceutical companies, regulators, non-profits, etc. accomplish their goals. How do these data repositories change patients’ lives? Do they influence their health outcomes? And how do they impact the physician/patient relationship? The answer to many of these questions is still unclear. Activated patients that fight their illness as individuals through healthcare and contribute their data to research to help others with these illnesses is a new paradigm. Technology has enabled the capture of valuable data outside the care setting and these data may indeed profoundly impact an individual’s relationship with their illness. Newly empowered patients may take a more active role in treatment discussions with clinicians. They may drive the prioritization of research through selecting specific projects for data sharing, and may open previously unavailable personalized care options. All of these possibilities will become clear as newly available volumes of data advance science.
- Sharing of personal data (such as genetic data, or medication effectiveness data) via freely available electronic platforms provides data access to more patients and more researchers than ever before. The open nature of these approaches may foster an environment of collaborative crowd-sourced discovery with some platforms already encouraging shared problem solving. DIY medicine also empowers patients to participate in their own health care and in the clinical research process, encouraging the involvement of the most important stakeholders. The benefits are both personal (self-efficacy) and also benefit the community at large, as advocacy and enthusiasm from patients can bring needed support to researchers, which in turn will benefit the patients themselves. In addition, data now available from outside traditional care settings and in volumes not previously accessible may unlock previously unavailable personalized approaches to care that we cannot envision today.
- There are certainly some risks from DIY technologies for clinical care. DIY medicine can potentially reduce costs if patients stay healthier and take more responsibility for their health. However, it might also increase costs if utilization increases unnecessarily due to patients’ misunderstanding of information. As these new models increase, more research will be needed to monitor their effects on costs, health outcomes, and utilization. Other challenges involve incorporating all these new sources of data into our current healthcare processes. How will DIY information from mobile apps and wearable sensors be validated? How will it find its way into the electronic health record to maximize benefit without further overloading “alert fatigued” providers? DIY research presents opportunities to accelerate the process of discovery – but may also pose risks of unproven therapies to vulnerable individuals. How will we standardize the scientific methods of such experiments to maximize generalizability?
- This concludes lecture a, DIY Medicine. In summary, DIY medicine is the end product of several trends: the increasing availability of online or remote diagnostic and treatment methods, more sophisticated consumer health products, a variety of digital health and mobile health and medical apps, growing use by patients of community based support and education groups, and new approaches to research including digital clinical research tools & Crowdsourcing. Changes in each of these areas, in many cases brought about by technological innovation, are changing the way patients interact with the healthcare industry and are powering the trend of DIY medicine. The sum of these changes is leading to a very different consumer who is empowered, knowledgeable and participatory in effecting changes in healthcare delivery and discovery.
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