Heather, I have been involved with trying to get patients more involved at all levels of their care, since my days in hospital practice.
I know that there are a number of Integrated Delivery Networks in the US, that have their own health plans and who have rolled out Population Health that are getting patients involved.  One health system, ChristianaCare even gets patients involved in decisions around treatments before the IDN looks at them.  They have a Value Institute and Geisinger has ProvenCARE a Value Model.  Geisinger posted a case study on engaging a patient into better eating habits, weight loss, and stopping their diabetes drug and creating a Food Pharmacy.  Everyone is talking Patient Centric/Patient Centered Care which is what we implemented in the mid 1990's.  We sat around tables talking about patients an realized we didn't have actual patients at the table.  Please let me know if you want to discuss further.

We, at The American College of Healthcare Trustees believe that patient engagement (related to patient-centeredness or person centeredness) is an exceedingly important part of the triple aim because it catalyzes the other two. The solutions are plentiful. Some simple suggestions include allowing at least a few minutes to allow a patient to tell their story "freestyle" without firing questions at them. Making eye contact (use a scribe or virtual scribe rather than having your head buried in the computer screen), smiling, introducing yourself if it is a new patient, articulating diagnostic possibilities and recommendations at the end of the visit, and outlining a plan b if the initial plan doesn't work are all important practices. It is helpful to have the patient articulate the above back to confirm understanding. It is important to consider that different people have different goals. Some might wish to live as long as possible, others value freedom from discomfort, others eschew poly-pharmacy, etc. We also need to embrace people doing their own research and be willing to discuss with them what they have found.
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Patient engagement sounds good in theory. I wonder how many who talk about it have actually spent a lot of time in today's healthcare institutions. A good example, above, is discussing how patients should be involved and never having a patient at the table to discuss this with anyone there. As a retired RN with an older relative now in acute care, I can say that patient involvement gets quickly lost in the rush to diagnose, enter data, do tasks and follow physician orders. If you truly want patient engagement, you have build in a way to ensure that it happens. There is no billing code for insurance for asking the patient what he or she wants. We do have data on just how much time the average MD visit with a patient takes. it's only a few minutes. Engagement? Really? Focus on that is not part of our healthcare system.

Carolyn, can't agree more. I worked in hospitals for over 24 years before stepping out and we always tried to engage patients in their care. We used to do discharge counselling (now called Medication Therapy Management), Community Programs, etc. My current family practice office has actually moved to two models: compliant and non-compliant patients. They spend more time with non-compliant (COPD, Diabetes, etc). I can also communicate via my EHR to discuss labs, meds. issues, etc. My concern is still the RVU model for physician offices, which comes back to your example of billing. I think IDNs like Geisinger have developed models because they do Population Health with a focus on not admitting patients to an acute care bed. They actually have a consulting company called xG, where they will train organizations on their model.
I have been helping a number of relatives through healthcare issues and my wife is a nurse and she has helped her relatives if they want it. There is still a generation where they believe we don't question anything and except the word of the clinician. We developed a Patient Safety video when I worked at Lehigh Valley Hospital and addressed a number of patient issues, safety, and also said if you don't see people entering your room without washing their hands YOU CAN ASK! We discussed knowing medications, falls, and a couple other issues. Every patient being admitted outpatient or inpatient had to see the video. We were trying to engage them more and it was done in English and Spanish.

Fred, you sound like my kind of guy. It is very distressing to see what is actually happening on the ground in health care these days. Theorists will continue to develop all their models and theories and that's fine. Except that no one is going to implement them unless there is a financial incentive for spending time with the patient. And yes, using the patient's own language helps! I am a former public health nurse, who made thousands of home care visits. If we want to keep folks out of the hospital, we have to understand what puts them there from their own perspective, not just our viewpoint.Fortunately, it was considered part of my job to fully engage the patient in the discussion about care at that time.(That would be "the olden days"). I can't imagine what it is like to be in the mechanical model of healthcare that pervades our system today.

Dear All,
It was interesting to read you experiences and the US perspective.
In Europe, our clinicians are battling with the time factor which often results in an emphasis on diagnosis and treatment without real insight into the patient's personal situation. The result is patients feel unable to approach their doctor. In the instances where a nurse is available, this may help, however, if people do not know how to talk to their care team it will remain undisclosed.
Time will always be a factor, if we can also educate patients on how to prepare for their consultation and also how to talk with their care team, this will improve the effectiveness of the communication and the efficiency of the consultation.

I understand the "No margin, No mission" in healthcare and learned many years ago about how healthcare was such a large business. But the focus of a hospital, clinical, clinician, etc. is always on the patient and we take care of them. We had a CEO who was an MD/MBA and I liked him, because he said we will "Lead by Clinical Excellence" and as we do so, we will improve care, take waste/cost out of the system, etc. This was in 1995. We didn't have our own health plan, but we tracked 30 day readmissions, developed a proprietary Balanced Scorecard for every patient care area, which included Patient Satisfaction (Press Ganey). Patients designed the Cancer Center and the BOD was involved with many patient care committees, including Patient Safety, because, the Hospital success and successes of everyone, depended on how well we took care of the community. Every meeting started with the PATIENT at the head of any chart/project and we worked our way down/backwards.
I still do some mentoring for pharmacy students and remind them, "Always be a Patient Advocate".
I am starting to watch what companies like Boeing, etc. are doing with their employee plans and believe that they will drive the change needed because if all those Fortune 50-100 companies work together, they can negotiate. No one entity is going to fix the problem in healthcare and even patients in private health plans would rather take a drug, than lose weight to control their diabetes, HTN, etc.

Patient engagement is part of a three way stool.  :Lacking engagement, therapy fails- this we know with 100% reliability!.
Managed care is quickly learning this is possibly the most important element in healthcare delivery.  Patient engagement has been denied for years for importance based on premadonna attitudes from the payers and providers.

Currently, the financial needs of all the player parts are becoming aware of this key element that has been missed. The lack of proper communications and the too rapid deployment of technology is commonly noted as roots for lack of understanding, and resulting patient complaints. Patient dis-satisfaction is easily found in all the plans and institutions. The older demographics are the significant cost driver of health care. Patient churn ( enrollment, disenrollment, plan changes) has been ongoing and is now  becoming a known cost factor for the plans due to increased resources needed to process new and moving patients.
I would say society has missed this key element in care delivery for care upto this point. Who? in society is most likely to have chronic illness, complex poly pharmacy?  the older aged adult.  Technology is not inbreed to them, thus the ideals of smart phone, electronic resources being deployed to help is mis targeted and often leads to failed care..  This works fine for the younger groups, but a refocus on the higher costing demographics makes better sense.  Patient advocacy is an essential need in our modern care delivery process.  Lack of patients voice  leads to what we face currenly.  Appropiate medications and services for the appropriate illness with full patient engagement.  Tom

Thought you might be interested in this from Pfizer.  Industry talks Patient/Customer Centric.  I still see firewalls with clinicians and HIPPA issues allowing them to get to close to patient data, but I guess they can hold meetings with patients who use their drugs?

Pfizer Pharmaceutical: Patient Experience and Innovation
 The pharmaceutical industry is evolving to consider customer experience – or patient experience, in this case – as a core dimension when bringing new drugs to market. Shifting consumer expectations combined with innovative technologies will have a dramatic impact on drugs and healthcare in the coming years. On this episode of CXOTalk, industry analyst Michael Krigsman speaks with two strong voices on this important issue. Craig Lipset is Head of Clinical Innovation within Worldwide Research & Development at Pfizer. Craig’s team is responsible for impacting clinical research through digital tools, innovative research approaches and novel collaborations. Michael DePalma works at IQVIA as Vice President of Digital Transformation. Click to view.
 

Thank you for posting this question. Patient engagement is key and more so participation in their personal and general healthcare system which can be difficult to navigate.

In the USA we have the Patient Centered Outcomes Research Institute https://www.pcori.org/ that has gone to great lengths to incorporate the patient voice in research. Their Board of Governors includes a multi-disciplinary group of leaders including Freda Lewis-Hall MD the chief medical officer at Pfizer (my past employer.. :) ) Craig Lipset also has furthered clinical trial participant inclusion not only through the sharing of information once the trial is completed, but also via a continued engagement platform: https://www.pfizer.com/science/clinical_trials/trial_data_and_results/data_to_patients

We shouldn't shy away from including people / patients / caregivers from participating in transforming the healthcare system especially our seniors. Aging 2.0 has created a role in their business model called "Chief Elder Officer" to help inclusion of the aging seniors voice in innovations that help them stay independent as long as possible as Thomas Kaye suggests.

The use of Blue Button technology is helpful as well in accessing personal health information (and clinical trial information in the case of Pfizer's clinical trials) though needs some adjustment for readability: https://www.healthit.gov/patients-families/blue-button/about-blue-button Access and use of personal health information is also a key determinant in participatory medicine.

We must look at this from multiple perspectives and in particular social determinants that impact a person's well being. More on social in a future post/answer to your question.

Please read my book Navigating the Healthcare Maze by Jeff Knott
Consumer healthcare literacy is the starting point!

The Patient Centered Outcomes Research Inst is a private organization formed early in the Obama administration and funded significantly by the Feds. I’ve been involved as a patient grant reviewer and Ambassador for over six years. They fund research that includes significant patient and stakeholder engagement. Doing some amazing work!

One thing is severely lacking in the USA's healthcare system is the lack of follow up with patients who are discharged from the hospital. The discharge notes all say the patients needs to call their doctor to follow up about their medical condition. My response is why rely on the patient or their family to only do the follow up? Why can't the hospital do a post discharge phone call to the patient and their family about 3-7 days after their discharge to see how the patient is recovering. The hospital needs to also notify the patients doctor of their discharge so the doctor can contact the patient also. This simple contact method would help to reduce patients from being readmitted within the 30 day window that is the standard measurement for hospitals to record. This could also discover whether the patient is doing better, or getting worse, or following or not following the prescribed medication dosing schedule.