Keywords: Participatory medicine, health care reform, Affordable Care Act, Patient Centered Medical Home, Accountable Care Organization, health information technology, shared decision making.
Citation: Smith CW, Graedon T, Graedon J, Greene A, Grohol J, Sands D, in collaboration with the SPM Founder’s group. A model for the future of health care. J Participat Med. 2013 May 16; 5:e20.
Published: May 16, 2013.
Competing Interests: The authors have declared that no competing interests exist.
We are in the midst of one of the most rapid and profound shifts in the history of medicine. When many of today’s physicians were still in training, most patients had little or no access to deep information about their health conditions. The web wasn’t available and medical libraries were off limits. Over the span of a few years, patients have come to have access to more medical information on their smartphones than late-20th-century Surgeons General had available to them from all their health information resources. The balance of power is shifting, and the amount of health data is exploding. Change is afoot.
“e-Patients: How They Can Help Us Heal Healthcare,” a seminal 2007 Robert Wood Johnson white paper, articulated this change and introduced a participatory model for US health care. Many discussions had taken place to propose what would be necessary to fix our health system. Tom Ferguson, in the original ePatient white paper, laid out many of the concepts that are needed to “fix our broken health care system.” The white paper contains many of these ideas but many years have passed and much has changed, including the current focus on the Affordable Care Act, with its emphasis on Patient Centered Medical Homes and Accountable Care Organizations (ACOs) as a means to improve quality and lower the cost of care. At the 2013 Cook’s Branch meeting, the Founders of the Society of Participatory Medicine (SPM) decided to add a chapter to the original ePatient White Paper.
This is truly the decade when patients will take control of their health, given their access to monitoring and communication tools, cutting edge and personalized information, and the power of networking via social media. Acknowledging that 90% of health care takes place outside of the physician’s office, there is now the probability of a fundamental shift in the dynamic between physicians and patients. The founders of SPM struggled to formulate a mission statement that would define the new relationship, ultimately agreeing on this statement:
Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.
Eric Topol, in The Creative Destruction of Medicine, noted, “As will be seen, our go-to source for health and medical information is moving away from our doctor — it is increasingly by crowdsourcing and friend-sourcing our entrusted social network.”
We believe that reforming health care, first and foremost, must involve activating and engaging patients to become participatory partners. Clay Christiansen and colleagues, in a Wall Street Journal editorial, argued that without more fundamental change in the culture of patients and providers, ACOs are destined to fail. We agree and, for starters, we must tell the public and clinicians how to accomplish this in terms that are understandable, compelling, and logical. As part of our 2013 e-Patient Founder’s annual meeting, we conducted a brainstorming session to generate ideas about how to effectively activate patients and providers. We proposed three core principles on which the care system should be based:
- Patients and providers are encouraged to form partnerships in which each has distinct roles and responsibilities.
- Patients are encouraged to use online resources to network with other patients and learn about their medical conditions, and physicians should help guide and promote discussion of this information.
- To succeed, there must be open, online patient-provider communication and information exchange, including sharing the content of the patient’s medical record.
Adopting New Roles
One practical way to shift physicians’ attitudes and practices toward the participatory medicine model for US health care is to expand the principles that define the Patient Centered Medical Home for primary care (PCMH). The model was originally developed for primary care providers, but represents applicable governing principles for all providers. In fact, the National Committee for Quality Assurance (NCQA), which developed the program, is currently developing a similar program to recognize specialty practices. PCMH points to new roles for both patients and providers. It requires physicians to become more involved in, and supportive of, patient education. It involves a multidisciplinary team approach to care, with each member of the team practicing “at the top of their license.” In many practices, these teams will also include mental health professionals, nutritionists, pharmacists, and other professional providers. And it will profoundly alter the provider business model, with widespread adoption and expansion of IT capabilities, more accessible and more frequent modes of communication, and reconfigured incentives and rewards for all stakeholders.
This is a “big idea” with profound implications for patient and provider interaction in the future. No longer will the ambulatory care system be based primarily on an “office visit” model. Physicians will be reimbursed for “monitoring” their overall practice population and will receive incentive payments for agreed-upon, desired outcomes. Since payment to providers will not be based solely on office visit charges, there will be greater incentives to communicate in other ways, including phone, email, text messages, and social media.
The concept of the “medical home” was introduced by the American Academy of Pediatrics in 1967. The National Committee for Quality Assurance (NCQA) created a certification standard for PCMH that was modified in 2011. This list comprises the six basic standards:
- Enhance access and continuity
- Population management
- Plan and manage care
- Provide self-care support using community resources
- Track and coordinate care
- Measure and improve performance
New Patient Roles
For participatory medicine to gain a major foothold, patients will receive guidance as well as tools, information, and data that allow them to be active participants in their care and work effectively with their providers to determine the care they receive. In addition to engaging in online research about their health and their medical conditions, patients will network with online communities to discover which treatments, providers, and facilities work best to address their condition. Through the encouragement of their providers and the network effect of communicating with other engaged patients, they will become more cognizant of their responsibilities toward maintaining their health and will more completely understand their medical conditions. This will become more feasible as home monitoring devices, patient health data visualizations, and associated medical costs become routinely available. In the context of the PCMH, patients will be able to participate in group visits to gain a greater understanding of their illnesses and to provide stimulating interaction with the provider team and patients with similar conditions.
As providers increasingly adopt electronic communication options, clinical care will shift to a “care anywhere” model. Office visits will become much less important and less frequent. Most routine followup, medication refills, review of blood pressure, adjustment of medications, and other former office-based interactions will become routinely conducted in an online, rather than an office environment. Office visits will only be necessary when a hands-on examination, interaction, or procedure is needed. This new paradigm of care will be much less costly, more patient-centered, more convenient, and will lower barriers to care. These electronic methods of communication may include email, web-based secure messaging, videoconferencing, mobile phone conversations, text messaging, and instant messaging. It will be commonplace for physicians to give patients a business card at each new patient visit which may include the physician’s email address and/or mobile phone number, along with an invitation for the patient to follow up using one of these channels. In addition, office nurses and other staff will often follow up with patients after encounters, either electronically or by phone, to assess progress and learn whether there are any questions or complications. Patients and providers will increasingly adopt the notion that followup and repeated communication is the norm and that it serves as the best means of achieving optimum outcomes, avoiding diagnostic errors, and obtaining high quality health care at the lowest price.
Although we have emphasized that the “new model” will rely less on the office visit, we recognize that some face-to-face encounters will still be necessary to establish and maintain a provider-patient relationship. Indeed, it will be very unlikely that such a partnership can be successful without the personal, human interaction that occurs during an office visit — and, these will remain periodically necessary and beneficial. We also recognize that there will always be a subset of patients who, because of personal preference or special needs, will be best cared for by coming to the office.
Mutual Advisory Roles
In the new model of care, physicians will no longer do things “to” patients; they will do things “with” patients as partners. The provider and medical office must be seen as only one of many influences in the patient’s health and medical care. This means that the physician is not ordering the patient, but advising them. At the same time the patient will continually advise the provider on how she can provide the best partnership possible to achieve the patient’s goals. Getting the patient’s input, perspective, and guidance will fundamentally change the way we think about health care from a “provider/recipient” relationship to a “care partnership” paradigm.
Patient advising will go beyond the individual patient-provider relationship and the care of the individual patient: they will also advise practices and health care systems as a whole. Practices and health care systems will no longer be developed for the convenience of the providers or administration. Instead, patients will be invited to participate in patient/family advisory groups and will be empowered to improve care, practice elements, and health systems.
Acquiring and acting on patient feedback about care is a specific and important way that patients will advise providers. Tom Ferguson often talked about the central role of patient feedback in designing and maintaining the ideal care environment. In addition to joining formal health care groups and committees, patients will become accustomed to being invited to provide feedback about their encounters. For example: who is doing a good versus bad job? How can a specific aspect of a visit or procedure be improved? What helpful comments or advice can you provide to the care team?
These mutual advisory roles will not be limited to the clinical setting, but they will also be critical in addressing clinical research trials. An open flow of information from both the patient and provider perspectives will inform the design of clinical trials from the outset, much like the care process that is being designed by the patient advisory groups. This will mean a stronger patient presence on institutional review boards, which are responsible for monitoring and approving clinical research trials.
Collaboration between Patients and Providers
The traditional means of communication between doctor and patient, with the provider “ordering and advising” will give way to an exchange on a “level playing field” with the patient and provider conversing and exchanging ideas. The provider no longer will be seen as “talking to” the patient and the patient “listening to” the provider and following their directions and orders. Providers will invite patients to engage and participate in their care, encouraging them to be proactive about their health within the context of this provider/patient relationship.
This will be seen as important enough to provide incentives such as copay refunds or other financial incentives to patients to encourage them to engage. Providers and patients will begin to “co-create” chart notes, allowing patients the opportunity to contribute to the written documentation in the chart. Decision support “alerts” will be constructed in such a way that they are sent to both the provider and the patient simultaneously, rather than just to the provider. Patients and providers will freely share web resources that they’ve found to be helpful.
Providers will also ask patients what they think about the suggestions they have made, and what advice they have. They will invite the patient to provide feedback, and will offer them easy-to-use tools for this purpose and commit to responding to the feedback. This feedback will include identifying and reporting diagnostic and other medical errors (this involvement will be welcomed by enlightened providers). Providers will be comfortable admitting when they don’t know an answer, and offer to search for answers together with the patient.
Physicians and patients will find new, innovative ways to use social media to communicate with patient groups who have similar conditions. This may include, for example, tweeting “N of 1” trials — ie, reporting a case from which others may quickly gain benefit. Patients will also share research findings they discover through their online research and interactions with other patients and patient groups. Physicist Michael Nielsen posits, in his remarkable book Reinventing Discovery: The New Era of Networked Science, that the development and accessibility of online tools “can be used to amplify our collective intelligence, in much the way that manual tools have been used for millennia to amplify our physical strength.” This is the means by which patient wisdom is already beginning to transform the practice of medicine, and when patients are able to easily obtain and share their clinical data, collective intelligence will be amplified in ways we can barely imagine today.
Physicians will commonly prescribe “information therapy” to give patients the material they need to manage their own health care. And similarly, patients will provide physicians with insights they’ve gleaned from their own experience and from their social network. Most physicians will have interactive practice web sites with information for patients such as Frequently Asked Questions, patient education videos about common conditions and a portal for secure messaging as a means of requesting an answer to a clinical question, or renewal of a prescription. The physician web sites will be interactive to encourage communication between patients and to In addition, physicians will make the charges for and quality of services in their practices more transparent, even posting these on their web site so patients can make more informed decisions when seeking care.
Information Technology and Participatory Medicine
Information technology, through the use of well-designed EMRs and other tools, will play a major role in changing the shape of health care. Patients and providers alike will have a variety of user-friendly options to report their experiences. It will be common to use electronic communication or visit-planning applications to negotiate the agenda for a visit before the patient comes into the office to see the physician. This will help to insure optimum use of their time together and, in some cases, will obviate the need for a visit at all. During interactions, a care plan will be collaboratively developed and made available to the patient. There will be easy mechanisms for proactive follow up after every encounter between patient and provider. Physicians will send out letters electronically or in paper form, depending on patient preference, generated from the EMR with lab results and instructions for any needed actions. Physicians and patients will use email or secure messaging to discuss changes in status, provide progress reports, or communicate other important information within the “followup” spectrum. In many ways the ultimate quality of the care process will be best judged by the quality and consistency of this followup. Rather than requiring the patient to wait “2 weeks, 2 months, or 2 years” to return to the office, there will an ongoing dialogue of “followup conversation” made possible and efficient by online or electronic tools. Many of these conversations can be conducted by physician extenders who can then alert physicians if more direct communication or intervention is needed.
Access to health applications and the web through connected mobile devices will play a central role in the future of health care through use of email, messaging, and mobile applications (“apps”). Many health apps are currently available for use on smartphones and tablets — over 13,000 on Apple’s App Store alone. Providers and patients will share lists of useful apps for particular tasks with each other. Patients will use apps to help guide weight loss, promote exercise programs, monitor chronic conditions like diabetes, and much more. Patients with cardiac problems will obtain and transmit an electrocardiogram to their providers. Touch sensitive devices will be used to monitor pulse, respiratory rate, and oxygen saturation. Patients with diabetes will measure their glucose on a connected glucometer and transmit them directly from their devices, usually allowing consultation and medication adjustments to be made without the necessity of an office visit.
As participatory medicine becomes more widely recognized and participatory providers more publicly valued, there will be electronic directories of “participatory providers” that will have a substantial influence on patients’ decisions to seek out a particular provider for care.
Education for the New Model of Practice
Traditionally, medical education has focused its efforts on content and procedure training, with little time and energy spent on training for the necessary skills to form effective patient partnerships. How might we change the educational system to fully embrace participatory medicine? Concepts of participatory medicine will be introduced during the first year of medical school and become a much more prominent part of the future curriculum. Behavior will be modeled for students and they will be taught how to set realistic outcome goals with patients. Students will be educated on “teach-back” methods in their discussions with patients. Medical schools and hospitals will collaborate to form effective clinical teams, including teaching students how to be effective members or leaders of these teams. It will be an exercise in futility if these concepts are taught to students without the routine observation and learning from these collaborative clinical teams who are demonstrating the participatory model of care.
Providing Patient and Provider Incentives for Participatory Medicine
Changing the culture of medical practice will not be easy or quick. The current system is steeped in financial and other incentives that, in many ways, continue to serve as barriers to the evolution of participatory medicine. Providers will begin to be recognized through programs such as “Participatory Provider” lists that will be published to recognize those who practice and encourage participatory medicine, and patients will increasingly seek out providers that practice in a participatory style. Employers and payers will provide financial or other incentives such as preferred parking places, debit cards, or recognition for exhibiting healthy behaviors such as obtaining recommended preventive screening tests, consistent participation in fitness programs, smoking cessation, maintaining target blood sugar levels, optimum blood pressure control, and weight loss.
Changing the Business Model
Moving to the world of participatory medicine will require a new business model. The existing fee-for-service system requires office visits, tests, and procedures for providers and hospitals to thrive. The new world of participatory medicine will only be successful if there are effective financial incentives for patients and providers. Physicians can ill afford to replace office visits with electronic mail messages or e-visits if the payment system doesn’t support these approaches. Management fees, such as per member per month (PMPM) payments or bundled payment mechanisms must be in place to replace fee-for-service. Medicare and Medicaid pilot programs are being implemented to provide primary care physicians a PMPM fee for providing PCMH services. In these plans, it will be more cost-effective for physicians to take a phone call or engage in an e-mail conversation than it will be to ask the patient to come to the office. Some type of hybrid will likely be needed, but office practices can largely be based on these PMPM systems, with traditional health insurance used to pay for catastrophic care.
Comparing the New with the Old
Here we compare a patient under the “old” or current system to this “new” system we have described:
Mrs. Smith is 59 years old, is 20 pounds overweight, has an average blood pressure of 145/98 mmHg and a fasting glucose of 135 mg/DL. Her hemoglobin A1c is 7.2%, indicating that she has previously undiagnosed diabetes mellitus. She complains of bilateral knee pain, which makes it hard to exercise. Radiographs of the knees confirm the diagnosis of moderately severe osteoarthritis. She also has complained of hot flashes, insomnia and depression.
Ms. Smith’s Care under the “old” (current) system.
She comes in for a new patient visit, scheduled for 30 minutes. She arrives at the time of the appointment, but registration is delayed because of a line at the front desk and she doesn’t actually arrive in the exam room until about 20 minutes past the appointment time. Her physician is feeling pressed for time because he has a packed schedule. So, he takes as good a history as he can manage in the time allotted for the encounter (which already has put him almost 30 minutes behind for all of his other patients). Since he is rushed, he didn’t allow enough time to get the details about the fleeting chest pains she has been feeling, but has tended to discount. The doctor rushes through a physical exam, orders some baseline lab tests, prescribes oral diabetic medication, recommends ibuprofen for her arthritis, refers her to a dietician for weight loss and dietary control of her blood sugar, refers her to a diabetes educator, asks her to start checking her blood glucose levels at home once a day, asks her to start checking her blood pressure 3 times weekly, and schedules a follow up appointment in 6 weeks. In addition, he recommends that she start taking an antidepressant, fluoxetine (Prozac), and suggests that this may also help her insomnia and anxiety. He doesn’t recommend hormone replacement therapy for the hot flashes, but discusses this possibility and they agree to revisit this problem in the future.
She leaves the office feeling like she is making progress towards getting her health issues under control. But, 2 days after starting the blood pressure medication, she is having stomach problems and has an annoying cough. She tries to contact the doctor’s office but, after trying 3 times, getting a busy signal, finally getting through, but not receiving a call back from the doctor, she decides it must not be anything to worry about and just continues the medications. But, in addition to the continuing cough, she begins to have increased problems with gastrointestinal discomfort and notices that her stools have turned black. Furthermore, she is starting to get dizzy when she stands up. Her husband becomes alarmed, and takes her to the Emergency Department where she is noted to have blood in her stool and a very low hemoglobin level, in addition to a drop in her blood pressure when she stands up. She receives two units of packed red cells and arrangements are made for an urgent upper GI endoscopy and colonoscopy to be done. She is noted to have diffuse gastritis, with areas of slowly bleeding stomach mucosa, felt to be due to the large dose of ibuprofen she has been taking.
She stops taking the ibuprofen, her knees start hurting again, but her bleeding stops and her blood pressures have come down into the normal range. Unfortunately, she has been feeling so bad that her attempts at weight loss and exercise have completely gone by the wayside. After six tough weeks, she returns to the doctor’s office to “go through the cycle again.” She has been taking the fluoxetine, but is still having insomnia and her depression is no better.
Ms. Smith’s Care under the “New” System.
When Ms. Smith calls the office to arrange for a new patient visit, she is enrolled in the office’s patient portal, which allows her to submit her medical history and all of her insurance and demographic information online prior to her visit. When she arrives in the office, she checks in using a computerized kiosk and, since she has been preregistered, the process takes less than 2 minutes. She is brought back to the exam room a little ahead of her scheduled visit. The doctor (who has already reviewed her online history) reviews her lab results, places her on the medications noted above, and schedules her for a group visit for diabetes care follow-up in 2 weeks. In addition, she is given an appointment with the nutritionist and with the diabetes educator for later that week. She is also given a web address for an online diabetes support group. She is also placed on ibuprofen for her knee pain, and is referred to a physical therapist that specializes in hydrotherapy for osteoarthritis. She is also given information about a certified acupuncturist to help treat her arthritis pain. She is referred to a well-respected web site that specializes in home remedies and is encouraged to look over the options listed for treatment of arthritis and knee pain and select any that she is comfortable with. She is asked to log her results for later sharing with the care team.
She is encouraged to use the patient portal to provide blood glucose levels, ask questions, and provide feedback about the effectiveness of her medications. She uses a connected glucometer, along with a new mobile application on her smartphone to upload her blood glucose data directly to her medical team. She is also given an opportunity to join the patient advisory group that the practice is forming, and she is invited to the first meeting three days from now. She is given a followup appointment with the physician in three months, but is reminded that scheduling is “open” so she can come back sooner, or anytime she has a need. At the end of the visit, she receives a brief online feedback survey inviting her to give the doctor and his staff feedback about the visit and what suggestions she may have to improve her experience. She notes on this form that the office staff gave her incorrect information about her group diabetes visit and so the outdated information on the patient forms was promptly corrected for future patients.
She is referred to the psychologist associated with the practice to help assess and treat her depression. In addition, she is given a web address for an online support group for depression, and is encouraged to log on to Psych Central to review the site’s array of resources and patient tools.
A couple of days later, she develops an annoying cough and is starting to have abdominal pain, so she logs onto the patient portal and asks the office team about these symptoms. The nurse who is monitoring the portal messages contacts the physician, who decides to switch her medication from the ACE inhibitor she is taking to a beta blocker. He also suggests that she stop taking the ibuprofen, try substituting Tylenol, and take a proton pump inhibitor, omeprazole (Prilosec), for a 2-week trial. She is asked to log on and provide an online update in 48 to 72 hours.
Two days later, her abdominal pain and her cough have resolved. Her blood pressures are in normal range, but her blood glucose levels are still running from 120 to 150 mg/dL. She is urged to continue the current course and check back online after her nutrition visit, her group visit and her diabetes education visit.
Two weeks later, on the same dose of diabetes medication, with the benefit of her classes and counseling, she logs back in and proudly reports that her glucose levels have come back into the normal range.
She returns to the office 3 months later, feeling great, in good control of her health issues, and confident with the care team’s approach.
Health care is broken. Expensive medications and procedures are routinely used without adequate reason; providers are inaccessible and practice defensively; much of the nation’s health care expenditures are spent on the last few weeks of a patient’s life, while a pittance is spent on health promotion and prevention.
Reform will not be achieved with ACOs alone but by meaningful activation of patients and providers who practice in a “medical home” environment. Communication between patients and providers will explode in open dialogue, full of followup adjustments and readjustments that usually won’t require office visits. Electronic medical records, routine, daily use of the internet, and extensive use of smartphones will harness the power of computing to eliminate many of the errors and omissions common in today’s health care environment. The business model of fee-for-service will give way to a PMPM system that will support office-based physicians who practice in a patient centered medical home mode.
It will be a new day and health care CAN be fixed! Are you ready? Will you help?
- Ferguson T, e-Patients Scholars Working Group. e-Patients: How They Can Help Us Heal Health Care. 2007. Available at: http://e-patients.net/e-Patients_White_Paper.pdf. Accessed May 13, 2013. ↩
- Topol E. The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care. New York: Basic Books; 2011. ↩
- Christensen C, Flier J, Vijayaraghavan V. The coming failure of ‘accountable care.’ The Wall Street Journal. May 15, 2013. ↩
- Wikipedia. Medical home. Available at: http://en.wikipedia.org/wiki/Medical_home. Accessed May 13, 2013. ↩
- Nielsen M. Reinventing Discovery: The New Era of Networked Science. Princeton, NJ: Princeton University Press; 2011. ↩
Christensen C, Grossman J, and Hwang J. The Innovator’s Prescription: A Disruptive Solution for Health Care. New York: McGraw-Hill; 2008.
Copyright: © 2013 Charles Smith, Terry Graedon, Joe Graedon, Alan Greene, John Grohol, and Daniel Sands, in collaboration with the SPM Founder’s group. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.