by Dave Chase

First published on Forbes on 02/18/2013

Since Dr. Farzad Mostashari’s (the U.S. “healthIT czar”) keynote presentation at the 2012 HIMSS conference, I’ve repeatedly heard that 2013 is the year of patient engagement. Dr. Mostashari unveiled the latest requirements to tap stimulus dollars and virtually all of the new items were around patient engagement. As Lygeia Ricciardi of the ONC recently stated, the ONC is going all-in on patient engagement.

Why the focus on patient engagement? Leonard Kish aptly called patient engagement the blockbuster drug of the century for its profound impact on improving outcomes. Combining patient engagement with other proven approaches such as choice architecture can further improve health outcomes. Evidence is overwhelming that healthcare providers who engage with their patients and caregivers have dramatically better outcomes.  Further evidence of patient engagement moving mainstream has come in during the first month of 2013 from government, academia and industry.

Though it’s fallen out of favor, “compliance” is the common phrase still used by some in healthcare. This contrasts with engagement. Here’s how the Center for Advancing Health distinguished the two:

We define engagement as “actions individuals must take to obtain the greatest benefit from the health care services available to them.” This definition focuses on behaviors of individuals relative to their health care that are critical and proximal to health outcomes, rather than the actions of professionals or policies of institutions. Engagement is not synonymous with compliance. Compliance means an individual obeys a directive from a health care provider. Engagement signifies that a person is involved in a process through which he harmonizes robust information and professional advice with his own needs, preferences and abilities in order to prevent, manage and cure disease.

Consider the following:

  1. Government: Recognizing that breaking down information silos is paramount to improving outcomes, the Office of the National Coordinate (ONC) ruled that providers utilizing EHR-agnostic, multi-provider patient portals can gain a major advantage over those using the old model of silo’ed EHR patient portals. As Leonard Kish stated, “This is a big step forward in patient engagement that recognizes consumers prefer a tool that’s similar to Quicken or Mint in personal finances, a place where all their information can be brought into one place that’s portable, and if need be, shareable within a larger community. While diminishing patient options, the single entry to a portal also diminishes the ability of the hospital to build the relationships with a network of outside providers and patients who are so critical to improving care, and ultimately, bringing more patients to the hospital. The key for both patients and providers is building a community of shared information that can drive improved outcomes through group learning. John Hagel has referred to this effect as “the collaboration curve“.
  2. Academia/Publishing: Health Affairs devoted its latest issue to a comprehensive review of the various factors contributing to patient engagement. If you want to bypass the pay wall, the California Health Care Foundation has sponsored free access to the various articles that would otherwise require a prescription. As Forbes contributor Michael Millenson stated, Money and Power Embrace Patient Engagement.
  3. Industry: The leading healtIT trade association, HIMSS, is releasing the seminal book on patient engagement entitled Engage! Transforming Healthcare Through Digital Patient Engagement at their annual conference in March. I had the honor of helping write and edit that book with Jan Oldenburg, Kate Christensen and Brad Tritle. It also includes several case studies highlighting the wide array of successes. There is also a special track at HIMSS13 focused on Patient Experience.

In the opening slide of my talk at the upcoming HIMSS conference I ask the audience which hospital they’d choose if given the choice between one where patients have an 88 percent reduced risk of dying of a cardiac-related cause when enrolled within 90 days of a heart attack, compared to those not in the program, clinical care teams reduced overall mortality by 76 percent and cardiac mortality by 73 percent versus others that didn’t have these outcomes. The choice is obvious. If results from successful patient engagement are this dramatic, it won’t be long before malpractice attorneys are going after providers practicing in the old delivery models. Why would it be different than other proven interventions once evidence broadens? That’s not a rhetorical question. I’m not a lawyer so curious the factors that go into defining the Standard of Practice. Comment below if you know.

During the HIMSS talk, a core question I will ask is “When patient engagement becomes the Standard of Care, will HealthIT be ready?” At the moment, most would argue the answer is no. I believe the way we jumpstart the process is by making the business case for patient engagement.

Preparing for the HIMSS speech and writing the book, I leaned heavily on experts in the field to share their experiences. Claiming one’s organization is “patient centric” is like proclaiming you are supportive of motherhood and apple pie, so I will focus on the best indication of patient-centricity — successfully engaging patients. I may do a follow-up piece on the 7 deadly sins of non-patient centric organizations – share your thoughts on worst practices in patient engagement. To contrast with what it means to be patient-centric, Vince Kuraitis outlined 5 non-patient-centric approaches.

Note to Forbes readers: Feel free to contact to me via LinkedIn if you’d like a copy of my HIMSS presentation, further details on the ONC ruling or information on the HIMSS book/talk.

Before the list, I have to credit Dr. Natasha Burgert, Dr. Steve Davidson, Dave deBronkart, Dr. Wen Dombrowski, Dr. Adrian Gropper, Regina Holliday, Dr. Leslie Kernisan, Dr. Rob Lamberts, Dr. Howard Luks, Katie McCurdy, Jan Oldenburg, Lygeia Ricciardi, Sherry Reynolds, Dr. Wendy Sue Swanson, Brad Tritle, Dr. Greg Weidner and Dr. Sue Woods for the culled list below. They gave a great deal more but I pulled out the common themes they shared.

With a tip of the hat to Steven Covey, listed below are the 7 habits of highly patient-centric providers. Like any short list, there are good arguments for others. Please add others that have been overlooked using the Comment box below.

1. Multi-Provider Patient Portal/Tools

The groundbreaking ruling by the ONC to help break down silos by rewarding providers in a community who are supporting a multi-provider patient portal overcomes one of the obstacles to patient engagement brought up most frequently by the experts. For example, Shahid Shah described it this way:

Single-vendor tethered PHRs connected to EHRs are perfect as document preservation and transfer tools but cannot provide the sophisticated multi-way messages and work lists required by extended care teams that are needed in next-generation engagement systems. Multi-vendor tools that know how to integrate various EHRs, PHRs, third-party consumer engagement systems (like Facebook, LinkedIn, etc.) are the only ones that can truly engage patients because multi-vendor tools are not locked into specific “clinical owners”. Any tool that is “owned” by a single enterprise cannot, because of its very nature, provide multi-hospital, multi-clinical patient engagement required by ACOs, PCMHs, and forward-thinking healthcare business models.

With people going to multiple providers ranging from primary care to specialists to allied health professionals, having a silo’ed patient portal (i.e., only applicable to that provider) isn’t patient centric. Providing patients a Collaborative Health Record that not only pulls in information from your practice but also has the ability to share information across practices is becoming imperative, as care coordination is increasingly important. I took stock of my own family of four and looked back on 2012 which was our healthiest year in a long time. Even so, we went to 7 different providers. No one wants to have 7 different user id/password combinations and have to go to 7 different places for information. As EHRs are getting adopted, this will happen unless providers move to EHR-agnostic tools that don’t perpetuate healthcare’s siloization.

As Jan Oldenburg put it,

As a patient, I should have the option of having data from multiple physicians and hospitals integrated with ease–I am not forced to be an HIE of one, tracking down all of the sources of data, manually requesting updates, reconciling duplications across data sources.  Instead, once I give permission, my data freely flows to the repository of my choice, where I have the option to view, download, share, and transmit it.  Currently, MU focuses these efforts more at the practice level than the health system level, and both patients and physicians need to be able to work with it at the overall health system level.” At the time Jan shared her perspective, the ruling hadn’t come down from the ONC that addressed her concern.

2. Medical Information is Made Relevant

While some providers have had so-called “patient portals” they have largely focused on administrative functions. I’d argue that the top 3 most popular “patient portals” are Google, Wikipedia and WebMD. While providers fret about the perceived challenge of engaging patients, as Steve Wilkins outlines, patients are already very engaged. The aforementioned 3 Internet sites reflect that the third most common activity on the web (after email and search) is searching for medical information. WebMD exists, in large part, due to the fact that providers have left a gaping void by not curating health information for their patients. As Jan Oldenburg stated about patient-centric practices,

Information is put in context and, when appropriate, interpreted to give it meaning.  Patients are consistently provided with data in the context of education, so they are not left to interpret it themselves (though they may choose to go beyond what is offered).  This would mean that labs, conditions, procedures, and even allergies all have education easily accessible that explains what they mean.  Lab results are presented with graphing tools that put them in context of “normal” and of the patient’s history.  If appropriate, physician’s can comment on the information. For example: “I know this result is a little outside of the normal range, but for you, Dave, this is a very positive result.”

Smart doctors are taking this a step further. Read Doctors are a Broken Record We Don’t Comprehend >80% of the Time for an overview of how doctors are making appointments higher value and gaining a significant ancillary marketing benefit in the process.

3. Patient-generated data is sought out

It’s well established that having patient’s track particular health items has a postive impact on health outcomes so forward-looking providers such as CareMore are enlisting their patients in the process. During a session with the Pioneer Accountable Care Organization (ACO),  Sam VanNorman from Park Nicollet (Director of Data Analytics and Business Intelligence) shared an insight that was recounted in various forms by other Pioneer ACOs.

“We have come to realize we have to incorporate the most important member of the care team — the patient. With our finite resources, we must figure out ways to offload what we have thought as tasks that needed to be done by our staff. In most cases, it’s the patient who can do it more effectively. In the process, the patient is more engaged and it’s more efficient for everyone.”

See Pioneer Health Care Organizations Share Lessons Learned and Challenges Ahead for more.

Jan Oldenburg described it as follows:

I can easily integrate data I choose to track on my own into other environments and choose to share it or keep it private as appropriate.  So if I wear a FitBit, I can integrate it into my personal health data and perhaps see my exercise patterns in context with my blood pressure or weight.  If I like WeightWatchers’ tracking tools, I can integrate them–if I chose–into my chosen environment.

As outlined in Healthcare’s Trillion Dollar Disruption, we know the old reimbursement hasn’t supported these sorts of things. Justifiably, doctors’ immediate reaction can be that more work is being added to an already overloaded schedule. Despite many doctors’ fears, often the changes are for the better as was mentioned by Dr. Bob Margolis, founder and CEO of HealthCare Partners, and one of the physician leaders who has demonstrated extraordinary outcomes:

You get to the tipping point, where the physicians go, ‘Wow, life is a whole lot better.’ You know, I only have to see 20 patients a day and I go home at night and I feel like I really helped them’—as opposed to, ‘I saw 45 patients, worked until 10 o’clock because I had to then do all my paperwork, I’m tired and I can barely pay the bills because Medicare and the commercial insurers are cutting back on my reimbursement.’

If firefighters worked like doctors, they’d be spending all day fighting fires and would be physically exhausted and would lose their effectiveness at fighting fires. While firefighting skills are paramount, if you spend a week with a firefighter you’ll find they spend much of their time on fire prevention activities in their community. This is the kind of shift that has happened at places such as HealthCare Partners, CareMore and others who’ve shifted a substantial part of their work from firefighting to fire prevention.

4. Portable and on the patient’s terms

I don’t know of anyone who lived a full life who has had only one doctor their entire life. This is especially true with the 50 million Americans moving every year and many more changing jobs (and thus health plans/providers). The best patient portal in the world has limited value if you can’t take that information with you. There would be congressional hearings if financial institutions prevented consumers from downloading their transactional history or they were charged $1 per printed page of their history yet the equivalent of that in healthcare has oddly become the norm. Fortunately, it appears the ONC is going to rectify that in Stage 3 of Meaningful Use by having the default be that a patient can choose where their data is sent. One can only imagine the criticism the federal government would receive if after sending $28 billion of taxpayer money on encouraging EHR adoption that consumers were unable to get their own data. The fact that this is still a topic of discussion is stunning.

Dave deBronkart (aka ePatient Dave) suggested reviewing Dr. Tom Ferguson’s “Seven Preliminary Conclusions (post 4 years ago). Whenever possible, healthcare should take place on the patient’s turf.  This is obvious in other industries – “location, location, location”

Physicians did a particularly good job of describing this item:

Dr. Wendy Sue Swanson:

Simply put, it needs to be easier to connect electronically. It doesn’t matter if you’re the patient, the doctor, the receptionist—health care has come to a place where we’re all dissatisfied with the current constraints of the system. The mobile devices in our pockets can access a world of information and our doctors still live behind steel walls. We can’t demand sclera-to-sclera care to demonstrate value or worth in health advocacy, medical expertise, or in health preservation. We have to incorporate the lessons from social tools into the ease of delivering care and in receiving care. New data from the Pew Internet & American Life Project confirms what we suspected: most people are online searching for health info, retrieving information in seconds. And many patients are online trying to self-diagnose. The reality is we patients, we doctors–we still want partners in health care. We just want it on the terms that we get everything else. I can go online and order groceries that will arrive at my door in a matter of hours. I can log into Google and search for an explanation to a new symptom with rapid-fire response. But I can’t schedule a visit with my doctor without calling and waiting on hold. I can’t access my pathology reports, and I can’t ask a 2 sentence question without a 15 minute-in-office visit, a $20 co-pay, and a 2 week wait. Something must change. Otherwise the information we’ve learned, the insight we’ve gained through our years of medical training and practice will be wasted.

Instead of constricting me to communicate and educate patients one on one, please build and support me in using tools to educate my patients in a one-to-many format. When new immunization guidelines come out, let me broadcast details and rationale (via email or social tools) about new vaccine rules efficiently to my patients. Let me update patients on efforts and tips for prevention using my phone. Let me text and communicate with teens in ways they prefer.

Dr. Sue Woods

Patient centered care is about enhancing the patient experience. Being able to meet people’s needs: respect their time, inform them, understand them as a individual (with a life and values and preferences), answer their questions, connect them with their data/information, connect them with one another, allow caregivers to participate.

As Dr. Adrian Gropper

There should be absolute agency, where a patient can seek the services of any agent including second opinion doctors, foreign services, family and community without any interference from the service provider. Data should be portable and Web (not-healthcare) standard APIs should be used whenever possible to lower the cost of market entry.

5. Collaborative Care Process with Shared Decision making tools

Former Medicare administrator Dr. Don Berwick’s stated “nothing about me without me”. Patient-centric practices recognize that the only person around for 100% of an individual’s care and appointments is the patient themselves. Naturally, they are the most critical member of the care team. Modern patient-centric systems allow for shared decision making, patient feedback loops and multi-stage care plans. A large percentage of individuals forget or misunderstand the care instructions the doctor has given them. Without reminders, it’s likely the patient won’t return to health as soon as they otherwise would. With reimbursement rapidly shifting to value and outcomes-based, the practice that isn’t able to easily work with their patients in between appointments not only isn’t patient centric, but also is in jeopardy of missing out on reimbursement.

Jan Oldenburg added that it extends beyond the pure medical items:

Shared decision making that includes cost issues.  I want to understand my options and my doctors recommendations in an environment that takes into account my values about outcomes versus how invasive the procedure is, and also takes into account my financial situation, what it will cost, how much my insurance will cover, and what my costs will be relative to other procedures, as well as efficacy.

6. Patient-facing tools that are inviting to use 

Perhaps this should go without saying, but it’s critical that patient-facing tools are easy to setup without convoluted processes. They should have the security consciousness required in healthcare and finance with a process that is more like signing up for LinkedIn than going through complicated PINs, waiting for something to arrive in the mail, etc. As Dr. Rob Lamberts stated, “The patients won’t use anything that is confusing to me, and the number of systems I would have to use to really meet patients’ needs is higher than I would like.” If they consume content via email, Twitter, Facebook, etc. let them reach it there (naturally, it wouldn’t be private info on the public tools — rather, it would be curated articles, video, etc.). For the clinical team, it’s untenable for most to have 5 tools to go to so they must have one tool to enable that. Jan Oldenburg added, “Usability testing should be ubiquitous for both patient and provider applications, so ease-of-use is a core value of the technology that everyone interacts with. Jessie Gruman has more advice for developers here.  With people more time starved than ever, unfortunately too many practices have a consumer experience that is closer to a visit to the DMV than is reflective of the highly professional service that is being provided.

7. Recognize the importance of caregivers and the Family proxy

Often overlooked is the vital role family and caregivers play. In many cases, they are providing more care than any professional.  Once again, Jan Oldenburg has a great perspective to add:

Focus on making transactions, tracking, and interacting with the healthcare system as easy for my designated caregivers as it is for me–and allowing me the option of sharing everything with them or giving them access to selected functions to perform on my behalf.  I might be comfortable, for example, with having my hired caregiver make appointments on my behalf and refill my prescriptions, but I might want my son to be the only person who can pay my bills.

The Institute for Patient and Family Centered Care had 4 tenets they outlined:

  1. Dignity and Respect: Patient and family perspectives are honored and their beliefs, priorities, and cultural backgrounds are routinely elicited and incorporated into planning and implementing care.
  2. Information Sharing: Patients and families receive unbiased information in a manner that is both comprehensive and comprehensible. Information exchange is bilateral, reflecting the mutually beneficial knowledge of all participants.
  3. Participation: Patients and families are supported and empowered to participate in decision making at the level they choose and to engage actively in self-care to the extent they are able.
  4. Collaboration: Patient and family are invited to participate in institutional planning, in program and policy development, in professional education, and in evaluation of services.

Finally, the ONC outlines the importance of this as well: “Shifting the mindset of providers and patients alike, so that participation by patients, families, caregivers, and each provider becomes routine, rather than the exception.”

Naturally, there is nuance to this sort of thing and I received a great suggestion on where this can go. As Brad Tritle shared, “I’m wondering initially if there isn’t a table or the like that could be created with the different categories of providers across the top in column headers (thinking aloud), such as inpatient, primary care, specialist (you could call some out), non-network specialist, Rx/Pharmacy, labs and then show tools down the side in row headers.   You can then show which tools may only include data from one of these categories – making them very single-provider-centric, and highlight some tools that include data from multiple categories that are more patient-centric, or even completely patient-centric if they are structured to include data from all.

I’ve highlighted below some other notable patient centric initiatives/technologies that are good for providers to utilize:

Honorable mention

  • Future proofed: Software rapidly evolves. If your patient-facing software has bugs or is out of date, it leaves a bad impression. Don’t be held hostage to a version of installed software. Some legacy vendors still charge for version upgrades. Worse than the cost of the version upgrade is the disruption to your patients and the practice of updating software on all of the necessary machines. Fortunately, modern website tools and patient portals are available in the “cloud” so that they are accessible from any web-enabled device and you no longer have to worry about version upgrades. You are automatically kept up to date by virtue of being in the cloud.
  • Security: Dr. Gropper believes there should Multiple Voluntary IDs (to limit aggregation) linked to centralized consent, transparent record locater services and accounting for disclosures. Also high on the list of consumer requests in the ability to communicate electronically with your office. Patients want to securely exchange messages with your practice. Most requests aren’t time urgent so being able to send a message on the patient’s schedule is beneficial to them and allows the appropriate person at the practice to answer queries without wasting time playing phone tag.
  • Scheduling: Airline-like ease of scheduling, checking-in, etc. rather than having to spend an extra 20 minutes in waiting rooms filling out forms.The number one request consumers have in terms of how they would like to interact with practices is to be able to schedule and check-in for appointments. To be patient-centric, it’s key to address this request.
  • Consumerization: Dr. Gropper articulated it as follows: Services sold directly to patients or to physicians so that market forces work for them instead of for the enterprise
  • One Stop Shop: The catchphrase when it comes to reaching individuals today is “fish where the fish are.” It is imperative that your digital presence exists where your patients are. Today that means the web, Facebook, Twitter and mobile devices. In other words, it’s not only having a patient-centric website but also a patient-centric web presence. If it requires many different logins to publish information to prospective and current patients, there’s a good chance it won’t happen and communications get out of date. Thus, providers should look for a publishing engine behind the website that can easily publish to the various places consumers frequent whether it’s your website, Facebook or Twitter.
  • All Practice Forms Should be Made Available Online: At one time, it was enough to make forms available to be downloaded. However, patients quickly realized printing out a form and manually filling it out didn’t save them much time. They continued to have to re-enter information that they have filled out dozens of times before. A modern website (aka patient portal) should have the ability to auto fill items that have previously been entered saving the individual time and allowing them to easily update information if it has changed. In the process, practices are saving tens of thousands of dollars in administrative costs by not having to enter information into systems. Instead, it is automatically brought in.
  • Open Notes: This was described in an earlier piece entitled Historic Day in Opening Doctor’s Notes