Posts Tagged ‘patient engagement’

Why I Fired my Doctor & What You Should Look For in Yours

May 12th, 2014

Cross-posted with EHealthEquity News.

I consider myself an activated (Level 4 on Dr. Judith Hibbard’s Patient Activation Measure), engaged (Lifetime Member of the Society for Participatory Medicine), symptom-tracking, official e-patient.

And yet a series of encounters with a primary care physician left me feeling so disempowered, disrespected, and disengaged that I felt like one of the hostile witnesses I deposed when I was a practicing attorney, whose answer to everything was “yes”, “no” or “I do not recall”.

This particular incident underscored the fact that without a patient-provider partnership, there can be no engagement. Sure, I can be activated – ready, willing, and able to learn about and take steps to manage my condition — but without someone to engage WITH – a doctor, nurse, PA, NP, a health system who wants to have a dialog with me, accept my patient generated data, debate treatment options with me until we negotiate a plan that works in my life context – there is no engagement. That’s why I have stopped using the term patient engagement in isolation.

It all started when I let my health system assign me (mistake #1) an internal medicine physician to attempt to provide primary care and play quarterback to my team of specialists.

I assumed (mistake #2) that because I had worked with many of the specialists involved in developing this coordination solution, that they would choose someone, who understood the type of patient I am – high health literacy, married to a doctor, work in health care consulting, involved, engaged, and experienced.

They did not.

Instead they chose someone – or maybe he drew the short straw – who although young in age, had a very old and paternalistic view of the doctor-patient relationship. We clashed in every way.  He would not accept my concise written summary of my extensive medical history. (The folks at NIH appreciated it!)  I guess I was an unreliable witness as well as an increasingly hostile one. He would not accept my blood pressure readings over the phone, which I found very ironic, since, while on the phone, I was editing a report (as part of a technical expert panel on patient-generated health data) for the Office of the National Coordinator for HIT.

He insisted I go to the ER to receive IV fluids, despite my pointing out that the ER is a dangerous place for an immunosuppressed person and not a cost or time-effective manner to administer fluids. Why not a home nurse or send me over to the infusion center if he could not start a line right there in the office? He was not interested in solution-generation. I could go on.

There were many similar experiences during our short time together and the end of the story is that I refused to return to his office and found a doctor who was a better fit for my ‘patient style’. (The chief of internal medicine who I learned was the pick of all the residents who needed a doctor.)

My new doctor and I have similar philosophies about patient care. I respect his expertise and he respects mine. He takes the time to understand my goals, preferences, and values. He coordinates my care to reduce my patient burden, decrease the time it takes to get answers, and make clinical decisions that are pertinent to improving my health.

So what can you learn from my experience? First of, here are two questions you should ask yourself:

  1. What is my patient style?
  2. Do I know the questions to ask, and the things to look in a doctor who fits my style?

Taking the time to find the answers to these questions may not only make the difference between frustration and satisfaction, but also between health and hospitalization.

If you have a great physician-partner consider sending them a thank you note to let them know that you appreciate their approach to your care.

Thoughts? I’d love to hear how you went about finding the right doctor who fits your style. Please share in the comment box below.

Portal Hypertension

March 20th, 2013

I have to admit, I was like Ralphie in the movie A Christmas Story, when he finally received his Little Orphan Annie decoder ring in the mail after a long wait and much anticipation, only to find out that the secret message was to “Drink your Ovaltine”.

Such was my let down when after finding out, only through passing comments by one of the physicians I am friends with at the hospital where I receive most of my care, that there was indeed a patient portal at the institution [Comment 1: if you have a patient portal please tell patients about it] and finally receiving a PIN number to gain entry, and working with the helpline to find out that I must enter my name in ALL CAPS because that is how it is in my patient record at the hospital [Comment 2: random case sensitivity not mentioned in the instructions, unnecessary barrier to use] I  accessed my patient portal to find – NOTHING!

Ok, almost nothing.  After being a patient at this institution for 6 years, seeing primary care, GI, transplant, having multiple labs, procedures, imaging, and being an inpatient there was the following information available to me:

  • Four (4!) values under general health – 1 blood pressure reading from December 2012 and 3 lipid values from June 2008
  • My medications list
  • My immunizations

That’s it!  Hello, where’s my data?  [Comment 3: The whole point of a patient portal is to have access to all the information about me (including the notes, see OpenNotes project ) in the EMR of the hospital and associated practices.] That not just my hope or opinion. When I finally got my hands on a marketing brochure for the portal they describe themselves as, “your direct link, via your personal computer, to the electronic health record your doctor creates and maintains for you.” It further states that, “Your entire paper patient record file is now stored digitally in a safe, secure environment.” If my doctors only have 4 values, a list of medications, and immunization records upon which to make clinical decisions about me then I am in big trouble.

As for other features – request an appointment and request a referral are really just secure emails that the fine print mentions may take 2-3 days to be returned.  I might as well just call. Actual appointment scheduling, alerts to upcoming appointments and allowing me to fill out the forms in advance of the appointment would be worth my time and very helpful to both patient and provider efficiency.  The renew prescription feature is limited, certainly nothing to make me give up the auto-refill and auto-renew offerings from CVS/Caremark’s website.

The final indignity is the request test results feature – JUST SEND THEM!  Why should I have to specifically recall and request each lab, procedure, and test result?  Also, I couldn’t even if I wanted to because only one of my doctors is listed.  Indeed, Meaningful Use objectives include providing patients with timely electronic access to health information within 4 business days of that information being available to the provider. Start with uploading the clinical summaries if that’s all you can handle right now, but 4 values over 6 years of data is inexcusable.

The Frequently Asked Questions section (my real questions are truly just WTF and why did you bother?) explains that this portal is not intended to be a PHR. The option is given to upload this information into my Microsoft HealthVault account.  Not much use if there is nothing to upload.

The FAQs also say, “no”, literally, to being able to view, share, or help manage your family members’ records. [Comment 4: Access by parents, children of seniors, or other caregivers is one of the top reasons that people would derive value in using a patient portal]  The marketing materials, however, state that, “you may choose to share your lab results and other information with a family member you want to help manage your care.” You just can’t do it here.  Well you can if you give your caregiver your ID and password, but they don’t mention that.

The rest of the site is health education and risk assessment tools and information on the various hospitals in the system. [Comment 5:  Risk assessment tools are more useful if you populate the risk factors from my record and I would be more willing to look through your propaganda if you had met my needs first].

In sum, I have seldom in my life experienced such great disappointment. This portal is more like Sarah Palin’s Bridge to Nowhere.  I know the technology, the policies, and the incentives exist to create and operate a useful patient portal. My institution just chose not to.  This says to me that activating, engaging, or empowering me is not important to them.  Fortunately, I am activated, engaged, and empowered enough to go elsewhere.

Supporting Patient Engagement

January 23rd, 2012

As the patient engagement “movement” grows, there are many health care practitioners and health systems who want to interact differently with patients – whether to improve patient satisfaction scores, obtain pay for performance incentives, meet standards for Patient-Centered Medical Homes or Accountable Care Organizations, or from a heartfelt desire to collaborate to improve outcomes as defined by patients.

The question most ask is “how?”.  “What does patient engagement look like in practice?  What does it look like in my practice?  What specifically do I do?”

Here are some examples (Hospital edition):

At the Institution Level —

  • Hire and empower a Patient Ombudsman to elicit and respond to patient and family questions and concerns
  • Get the administrators out of the office sometimes and take them on Executive Team Rounding to actually meet patients
  • Conduct Patient/Family Surveys and Patient/Family Focus Groups and analyze, display, and use the data
  • Convene Patient/Family Advisory Boards
  • Appoint Patients and Patient family Members on  your Governing Board

At the Health Care Practitioner Level

  • Understand and assess your patients to ascertain their differences in preferences and capacity for engagement (Read Dr. Jerome Groopman’s  and Dr. Pamela Hartzband’s Your Medical Mind)
  • Give your patients and their families permission to partner with you. Voice your willingness to be answer questions, explain things more fully.
  • Ask permission to connect with patients. (It demonstrates respect)
  • Don’t swoop. As workflow permits, time your visits to patients when they are awake and family is present. (At 5:30 am after a restless night in the hospital most patients are not at their most cogent and inquisitive.)
  • Share information.Share with your colleagues to enhance coordination and share with patients to help them ask the right questions and make the right decisions (for them).
  • Start preparing patients for post-discharge self-management as early as possible

Thank you for your support

Research Literacy and the Democratization of Data

January 17th, 2012

In last week’s post, New Year’s Resolutions for E-patients, I used the term research literacy.  Go ahead. Google it. “research literacy”  I’ll wait.

What did you find?  Nothing. Exactly. Your heard it here first folks. A new concept for a new year.

As a long-time Star Trek Fan (Original, Next Generation, Deep Space Nine, even-numbered movies) I had believed that space was the final frontier.  In patient engagement, however, I have come to believe that in fact the final frontier is research.

From Patients Like Me impromptu lithium studies to reviewing grants for the Patient Centered Outcomes Research Institute (PCORI), patients are acting on pent-up desires to engage in research as other than mere subjects.

Although there is greater acceptance by physician, health system, and academic communities that patient engagement is desirable and likely to improve outcomes on an individual and population health basis, there still exists skepticism to the point of incredulousness that patients could, let alone, should, have a role in research other than as subjects.

Patient engagement for a large segment of the healthcare system equates to compliance, or if they are being politically correct, adherence.  Engagement, to them, means participation to the degree that we are able to do what the doctor has told us to do correctly.  However, just as children do not stop growing at that adorable toddler phase, patients are maturing as well in the types of questions we ask and the roles we would assume.

One of those roles for many patients, particularly those with chronic and/or rare diseases, is the development of research questions, queries about analysis and applicability of existing data or recommendations for studies that answer questions based on their own experiences and areas of emphasis.

There are numerous instances of patients or parents/caregivers starting foundations or companies for that matter to jumpstart the discovery and development of cures or even advocacy organizations like Faster Cures which has a robust track record of innovation and collaboration, but aside from the work of a limited number of advocacy organizations confined primarily to specific disease states, (Advocate Institute), no one teaches the average patient how research is conducted or provides an opportunity to become a researcher.

A great deal of the resistance by the research community to patient engagement in this arena is the inability of most patients to “speak the language”.  Just as in Stage 1 of Meaningful Use patients were dismissed when they weren’t able to answer questions such as “Are you in favor of meta-tagging of data?”, patients without backgrounds in biostatistics, study design, and epidemiology are considered to have nothing to offer to the field.

Learning the lessons of Stage 1 Meaningful Use of Health Information Technology, which has progressed to a burgeoning consumer engagement phase and active mhealth community, I propose a two-fold solution:

(1) Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information.  (If that sounds daunting or unreasonable, figure that if nothing else, the ability to differentiate absolute from relative risk will stand you in good stead every time you read the morning paper and see a screaming headline that states drinking coffee increases your risk of death 800%)

(2) Researchers need to develop the right questions to facilitate the translation by patients of their experience into research terms and frameworks.  Just as “Are you in favor of meta-tagging of data?” evolved into “What do you want an electronic medical record to do?”, the clinical research community would benefit (in better targeted studies, faster recruitment, better retention, and increased adoption of interventions) from meeting patients where they are.

PCORI is charged specifically with identifying and developing mechanisms for patient engagement in comparative effectiveness research.  It is potentially transformational in defining research in a manner that is “informed by the perspectives, interests and values of patients throughout the research process, from the selection of research questions to the dissemination of research results.”  It is my hope that PCORI and others begin providing patients with the training and tools to make high-quality contributions to research and motivation to physicians to set another chair at the table.

Defining Patient Engagement

February 1st, 2011

The mad scramble to figure out how to “engage” patients in their healthcare has begun!

Prompted by federal stimulus money for health information technology development and usage, the rising number of patients and caregivers using the internet to question both their care and the healthcare system, unsustainable costs of patients with preventable chronic disease, and new quality measures that grade medical facilities on their “patient-centeredness”; everyone from PR firms to hospital boards are trying to figure out how to engage patients.

1. What does it mean to engage?
According to the Merriam Webster online edition, E-N-G-A-G-E has several different meanings. The 1st of which is “to offer (as one’s word) as security for a debt or cause” – I guess this is how consumer directed healthcare came to mean patients pay a greater share of the cost of their healthcare. The 6th meaning is “to enter into contest or battle with” – this must be what many doctors envision will happen if they allow patients equal footing in healthcare decisionmaking. It is the 5th meaning “to hold the attention of : engross b : to induce to participate” that most intend when they talk about engaging patients in their health, although this too frequently devolves into, listen to all the health information and medical treatment prescriptions we give you and comply.
2. What does meaningful engagement look like?
Properly done, patient engagement in action looks like shared responsibility between patients (and their families if applicable), healthcare practitioners (the entire team – surgeons, physicians, nurses), and healthcare administrators (providers of the infrastructures and the payment models) to co-develop pathways to optimal individual, community and population health. Patient engagement brought to life, means involving patients and caregivers in every step of the process, providing training or financial support if necessary to their participation. Patient engagement is not satisfied by a survey or an annual meeting of an advisory board. Going back to the definition above – patient engagement must “hold the attention of patients” – give us something useful to do? Let us provide solutions to medical error rates, give input on facility design (not just the paint color, but the placement of the outlets in the rooms so I can stay attached to my infusion pump and still get to the bathroom), develop research questions, define what outcomes we find valuable to measure, train staff to be culturally competent – that would hold my attention. As for “induce to participate”, beyond making the connection of action to our own health and well-being, many patients are willing to devote significant time and effort to making the system better for their children, grandchildren, and for future patients.

My question to hospitals and others pushing back on the idea of meaningful patient engagement is this: Why would you reject the help of thousands of individuals positioned in various ways to help you be more successful?