Nationally-recognized governance expert Beth Daley Ullem addresses the state of patient engagement in heathcare and provides a vision for establishing a minimum standard of care for patient engagement programs.
2. Evolution of the Patient’s Role in Healthcare
over the last 50 years in
3. Activated Patients:
Cost Less and Better Outcomes
Patients who are activated in their care
have been found to have costs that are 8-
21% lower than similar condition patients
who are not activated in their care.*
• Patients with low levels of activation are
twice as likely to be readmitted to
hospitals within 30 days of discharge.**
*Health Affairs 32, no 2: Judith H Hibbard et. al.
**JGIM: Feb 2014, Vol 29 Issue 2Mitchell et. al.
4. Patient Activation = Engagement
Once a patient is activated and motivated…
It does not mean that they actually can be ‘engaged’
unless the healthcare system provides the
information, support, training, systems and
processes for successful engagement!
7. The Current Challenge for
Patient and Family Engagement Programs
PFE has become a ‘catch all’
term for too many things.
2013-2014 AHA study of ¼ of the
US hospitals PFE programs
found wide variation in PFE
programs and policies.*
*BMJ Quality and Safety June 16, 2015
9. The Current Challenge for PFE Programs
What should the minimum
components for a PFE program
What should a best-in class
If you are missing some
components, are you still
authentically having a PFE
1. Patient Engagement in
Hospital Decision Making
2. Patient Engagement for
3. Patient Engagement after
PFE Roadmaps Need to Set a Minimum Standard
1. Patient Engagement is a Priority for
Hospital Decision Making
– Hospital has a PFAC and Patient
representation on the Quality Committee of
Board and Board of Directors
– Governing Board Reviews Safety, Quality and
Patient Engagement Metrics In-Depth
– Leadership and Front-line Compensation
Includes Quality and Patient Engagement
– Front-line Hospital Employees Get Training
Patient Engagement and Input on
Proposed PFE Minimum Standards
2. Patient Partnership for their Individual Care
– Medical records access
– Shared decision making for all parts of care and
– Multidisciplinary coordinated care esp. for complex/
– Patient access to RRT activation and grievance
– Bedside rounds
– Language support
– Visitor/Family access
– Strategies to build health literacy and condition
Proposed PFE Minimum Standards
3. Engagement after harm
– Transparency of and learning from harm
– Patient input in RCA after harm event
– Early Conflict Resolution after Harm Events
– Training for Difficult Conversation
– Regular review of distribution of grievances
and incident reporting
Proposed PFE Minimum Standards
1. Outcomes and price transparency will become
a starting point for care
• Comparative reporting and pricing of most common
2. Advances in Heathcare IT will enable better
patient voice and management of care
• Patient real-time bedside interface into the EMR
• Significantly more interactive Push/Pull of med
administration, chronic care and scheduling
• Education online/video decision making support for
conditions and procedures
3. Deeper community outreach and care
coordination will improve ability to manage up
and downstream of point of care
4. Patient activation assessment and scoring will
become part of plan of care
Upcoming Next Phase of PFE Standards
The evolution from a paternal ‘take care of me’ model to a mode of ownership, engagement and thinking about quality of care in the way customers think about other products has been a slow shift. Some of that shift is due to consumers own health literacy and increased activism and some is due to having more ‘skin in the game’ from higher deductibles and self-insurance. But, I think we are now at a tipping point of toward a new phase of customer engagement – where increasingly information will be expected and engagement becoming the norm.
Healthcare is not yet ready for activated patients in its systems, training and integration of care. We must look to other industries who have made a leap to integrated and educated consumer relationships. When you think of certain industries that you view as very customer-centric in your daily life, what can we learn from them? What do they do that we could do in healthcare? What other industries have been non-transparent or have difficult customer interfaces that create barriers for customers?
Organizations like the Keystone Center and Conferences that bring together the leaders and innovators like you must learn from these other industries about how to build a fundamentally different relationship with your patients going forward that will allow for better quality, more cost effective and more engaged care.
Patient activation, as you know is defined as ‘the skills and confidence that equip patients to become actively engaged in their healthcare’. This is different from compliance, which is more about following advice. Activation involves self-management for a better outcome and accessing information and alternatives to optimize one’s health goals and care plan.
Clearly in my previous stories, I was an activated patient for my son Mac’s care – working to build my own literacy on his conditions, develop a grid of outcomes and make decision criteria to solve for the best care for him possible given his diagnosis and the variance presented to us in outcomes for his care.
From an insurance standpoint, I often wonder if, as an activated patient, I cost less??? Clearly, 4 open heart surgeries versus 1 is a big savings in quality of life, risk and cost. I addition, I think that by being a prepared and motivated patient I was able to keep him out of the ER on many occasions when a less engaged or prepared parent might not have been able to do so.
I gave a speech to a group of specialty societies a few years back and at the end of the speech one of the audience said ‘You are not my typical Aunt Louise’. Intimating that my level of activation was so many standard deviations from the norm that I could not possible represent what patients want and what they are capable of. I think very often we underestimate our patients capabilities and capacity. If we can find a better way to communicate that encourages preparation and learning, ownership and communication that ‘teaches back’ instead of ‘talks down to’, I think patients are capable of much more that most in healthcare give us credit for. Furthermore, if a patient chooses not to be activated – at least it is a choice – having access to information and choosing not to be involved. Verusus now, even when activated, patients struggle too hard to get basic outcome and pricing information necessary to make good comparative decisions and thoughtfully participate with their medical team about their information.
There is more and more evidence that links activated patients with better health outcomes and lower costs. Dr. Judy Hibbard created a Patient Activation Measure that asks questions to patients and categorizes them into 4 activation levels. Multiple studies have found that people who score higher in activation levels are better in preventative care and healthy behavior, have lower costs and better outcomes than patients with low activation levels.
A Minnesota study of more than 25,000 patients found that for every additional 10 points on a Patient activation score, the likelihood of an ER visit was reduced by 1 %.
So, clearly, one major priority for your health systems along with the state and private insurers is how to increase patient activation – it saves money, provides better outcomes and builds more satisified patients – but which are the targeted, right interventions to build a more activated patient?
So, if you can and do triangulate with your community partners, insurers, employers and hospital to build the skills, peer support and interactivity to activate more patients- Frankly
It is just not enough.
Right now, we are spending so much energy to better prepare and activate patients, but many are finding , as I found, that they are still lacking the outcomes transparency and pricing transparency to have a full set of information to make decisions.
It is as if you are teaching me how to do the oil change and care for my new car, you are teaching me I should ask good questions about the car with the dealer, I should really read about my car and join an online community to understand more and see if other people who bought cars at that dealer are happy. But, at the end of the day, when I buy a car, I can get 1) prices and 2) comparative outcomes. Those are two pieces of information that just are very rare still in healthcare.
I wanted that outcome information when I was comparing options for my son’s cardiac care and consumers are tired of being asked to pay more out of our pockets and not have the price or quality information to really make good decisions.
This is really the only industry in our developed economy that asks consumers to be engaged when they lack the basic information.
To achieve the goal of the Triple Aim – population health, good consumer care and lower costs – we need to create more activated consumers and more transparent information and a much higher standard of engagement of patients. That is the Holy Grail we are working towards.
Sometimes heatlhcare can look as confused and backwards in how we are operating as the knights and King Aruthur in the Monty Python comedic tale. In fact, since sequels are so popular in the movie industry maybe we could ask the members of Monty Python to reunite for a film they could call Monty Python and the Search for the ‘Triple Aim’. We could all bring our coconuts and travel to Washington, then visit the hospitals then into the dark land of insurance.
On a more serious note, it is hard work to really move these elements of an entrenched industry forward. It is work that involves risk, new business models, new training, more collaboration and better systems integration.
The Holy Grail of the Triple Aim is achievable and I really think I’d like to show you how to do it on the next slide…
In fact, this slide is really just showing us all something we already know – which is more activated patients who are truly engaged in a system that is transparent with information for them will lead us to the Holy Grail of the triple aim.
On the y axis we have patient activation and on the x axis we have engagement. Fundamentally we need to be moving our patients up on the y axis and moving our hospital, communities and insurers out on the X axis so that we end up to the upper right quadrant (aka The Holy Grail)
The problem with engagement is really the same problem with most of the rest of healthcare – VARIATION.
We are doing too many different things to engage patients and not really knowing which ones have the greatest ROI and yet still not releasing the transparency of information that patients need to fundamentally be engaged.
So I’m a mom. Right now the word of patient engagement looks much like the junk drawer in my kitchen. When, fundamentally, most families need certain basic things in our kitchen drawer and only a small 15-20% variance based on our environment, interests, economics etc.
Over this incredible conference, you are convening not only to exchange new and exciting ideas, but, more importantly, to really get to the core of which work you are doing to engage patients is most important and most impactful – the highest ROI. You are here not just to come up with new ideas but to prioritize the ideas you do have, and to more deeply commit to the ones that you and other know are working. In other words, to prioritize your activity, ensure its efficacy and reduce the variation in order to have greater impact.
I know I am in Michigan, so I should probably refer to the Spartans or Wolverines, but I love John Wooden for his insight, humility and depth of quiet leadership.
For those who don’t follow basketball, the late John Wooden was the incredible UCLA basketball coach who won 10 NCAA national championships and over an 80% winning percentage – just unheard of.
I have heard this quote and I think it deeply applies to healthcare.
We are so busy in hospitals right now. But I think we have to sometimes pause and ask if all the activity is leading us to achieve the type of healthcare we want to see in our country and that we as patients want to experience.
Some of our activity is really achieving those ends and, often, some is not.
When we are at wonderful conferences like this it is a great time to pause and reflect what we want to achieve in patient engagement and if our activity is really aligned to achieve that goal.
To me, to move from activity to acheivement, we need to use conferences like this to organize, prioritize and commit to the non-optional elements of a PFE program. Our PFE programs must become more standard like my kitchen drawer and really, I think much of the discussion should be not about creating new programs but making sure all the hospitals are enacting the elements of a minimal PFE program and moving toward a best-in-class / next generation program.
Right now there are a few very good assessment tools and guidance tools to help you establish the PFE program in your hospital such as the Keystone Centers Roadmap Program. I’d encourage you to take advantage of these resources and really assess what big components your hospital is not doing and would be part of a basic, minimum standard PFE program.
All the PFE programs basically say that a minimum PFE program must do 3 primary things.
The First component of the PFE programs is to structurally prioritize Patient and Family Engagement.
As you look at your checklist, where does your hospital stand on each of these components?
I spend a lot of time working with hospital boards. One of the first things I do in my assessment work is to understand how the Board reviews quality, clinical outcome and safety information and whether the compensation structure for the leadership teams is really balanced on these elements of just on financial margin. In a few questions, I can learn how centered on patients a hospital really is – if they put financial success and not the healing and safety of patients as their priority both for compensation and time spent on their board agenda.
Having patients engaged in hospital decision making keeps everyone in the room reminded why we are all there – to heal and help patients.
The Second component of the PFE programs is to partner with Patients for their Individual Care.
As you look at your checklist, where does your hospital stand on each of these components?
I know that in my own sons care – the approaches to partnership with us as a patient have really varied as we have received care at multiple institutions. One hospital was very set up around chronic care and another I had to be the translator because the silo’d teams never talked with eachother. Some hospitals really had an integrated EMR and others still make it extraordinarily difficult to get access or event to get the teams within a system to get the same visible medical record. Some hospitals included me in rounds and did them bedside and others I felt like I had to beg, cheat and snoop to learn what they were doing to my child.
I don’t think this level of variance in how we are engaging families is acceptable. I think there is a minimum standard and if your hospital is not meeting it – the ‘engagement’ promise starts to look like optional – we engage here but not there, or on this but not that.
Inconsistency and variation is one of the greatest problems in healthcare and patient and family engagement are not immune.
The third and final critical element is this notion of transparency and engagement after harm. I strongly believe that we need transparency of both good and bad outcomes to have our healthcare be better and better engage patients. Information is power and now patients are still too powerless because we get so little access to information in heatlh care.
Information and transparency is the worst after a harm event. Lack of engagement after are harm event is deeply hypocritical – telling patients that we will engage you if things go well – but if they don’t go well we cut you out and shut off the information spigot. It is also a very uneconomical thing to do. In the 3 pm panel today, we will learn that not only is transparency after a harm event better for the culture of safety, the learning from the event, transparency and engagement is also economically better. Yet, culturally, our organizations continue to resist transparency after harm.
I believe that if your PFE program does not promote engagement with patients after harm events – it is not a true Patient and Family Engaement Program. Like a family, we engage, support, care and love in good times and bad. To only have a PFE program in the good times is disingenuous to the care you are trying to give to patients and the trust they place in you.
Does your PFE program also address engagement after harm?
It should. Patients expect transparency and engagement in good times and bad.
I’d be remiss if I did not say that what I talked about earlier – was today’s expectation of PFE. I think coming around the corner is a much higher expectation for your PFE work.
I think we are coming into the age of a requirement for greater transparency of outcomes and price for common acute and chronic conditions.
I think our IT will in the near future allow more patient push and pull of information from the EMR and into the EMR and it will be information that matters more to patients.
I am hopeful that the specialty societies will better support their frontline clinicians and patients who receive diagnoses with better video and interactive online materials to ensure that patients have tools to understand their diagnosis and prompts for conversations with their medical staff.
I thing the deeper outreach into communities to manage chronic conditions will continue and patients will be enveloped with better managed care.
I think the notion of patient activation will become part of our vernacular both in terms of how to move patients into a higher activation level and how to best interface with patients of the different activation profiles in our communication and information transfer.
I think if each of us looks into a crystal ball, we can see what we hope our engagement will look like when we are patients. For me, though this journey of loss of a child and now living with a child who is a ‘frequent flier’ in the system, I am so often frustrated and yet also very hopeful that innovators like you and conferences like this can convene the passion, the commitment and the idea sharing to go back and do more, do better and deliver on the promise that we all want to make to patients.
I guess the bottom line is that this notion of a minimum program is a good time for some self assessment – and a chance to pause and compare our activity to our desired achievement toward the Holy Grail led by moving along the axes greater activiation with greater engaement