Archive for the ‘Doctor-Patient Interactions’ category

15 Things Shaping Patient Experience in 2015

January 6th, 2015
  1. Patient Experience: The biggest thing shaping patient experience is that patient experience now matters, due to satisfaction scores and financial penalties among the largest drivers.
  2. The Affordable Care Act: Insurance coverage expansion for millions of Americans, particularly those with pre-existing conditions has provided new opportunities for patients to seek care, but the ACA still faces challenges from a newly empowered GOP Congress and Supreme Court cases.
  3. Electronic Health Records Adoption: More doctors’ offices and hospitals have implemented their EHRs and are learning to use them, offering patients fewer opportunities to give the same demographic information over and over again, although multiple portal sign ins may fill the time.
  4. Access to Data: The number of pledgee organizations to the ONC’s Blue Button program continues to grow and Meaningful Use requirements that patients have the right to view, download, and transmit their data improves access to medical records and claims data.
  5. Contributing to Data: Whether you wear a wearable activity tracker on your bracelet, belt, or bra, patient generated health data (PGHD) is expanding the scope of what is considered health data by quantifying the 99% of our lives spent outside the doctor’s office.
  6. Framework for Big Data: Lots of “little” PGHD quickly becomes Big Data with the potential to revolutionize research, creating an active, adaptive learning health system once there is greater consensus on issues of privacy, security, and consent.
  7. Personalized Medicine: The realization that Big Data and genomic-based medicine are interdependent, each needed to facilitate personalized treatment delivering precision therapeutics trained on biomarkers and individualized care based on analytics.
  8. Defining interoperability: All this data stays data, rather than knowledge, and actionable information unless it allows care to be connected seamlessly, following the patient in a physician and practice-agnostic manner rather than captured in hospital system silos.
  9. Telemedicine and Retail Clinics: Bringing care to the patients whether around the corner at the drugstore, an urgent clinic, or through video consult, provides substance to concepts like access and convenience.
  10. Cost information: The advent of higher co-pays, deductibles, directly paid premiums, and shifts in the conversation to value in healthcare creates the demand for transparency in the cost and price of tests, procedures, and services.
  11. Expanding roles of nurses, PAs, NPs: As the medical complexity of patients, as well as the recognition of the behavioral, literacy, and other challenges creating barriers to patients co-developing, understanding, and implementing prevention and care plans and achieving goals for which medical practices are accountable, the role of non-physician clinicians will continue to expand.
  12. Online Patient Platforms: Online platforms and communities provide 24/7 information, support, and experience comparisons heretofore found only approximated in live support groups or phone hotlines.
  13. Research & Drug Development: Patient advocacy organizations are taking a more proactive role in developing research agenda, pulling together research consortia, funding targeted drug development through venture philanthropy models, and redefining risk/benefit and other determinants of the drug approval process.
  14. The Patient Voice: New positions in federal agencies, on medical boards and committees, and in hospital councils mark the transition from patients simply having a voice, but having a vote in essential matters shaping healthcare.
  15. Relationship with Doctors: The doctor-patient relationship is stressed, stretched, and frayed by all of the above, but more important than ever for the integration of scientific, clinical, and social information into expert counsel, deft surgical technique, and partnership in healing.

All Hepatitis C Patients Deserve Access to Cures

July 28th, 2014

Today is World Hepatitis Day.  We should have much to celebrate. Recent FDA approvals have given liver patients and providers medications with 90-100% cure rates with shorter treatment times, fewer adverse side effects, and easier administration.  Three medical societies issued new guidance to assure that physicians were aware of the transformative nature of the new therapies and had the information needed to treat their patients.

 “Hepatitis C can be cured, and today’s drug therapies are very effective and easier for patients to take.”

— Jeffrey S. Murray, M.D. deputy director, Division of Antiviral Products, FDA Center for Drug Evaluation and Research

However, commercial health insurance plans and state Medicaid officials are restricting coverage to the most effective therapies arguing that the price of the medications — $70,000 -$170, 0000 — is too high to pay in the case of a disease with more than 3 million patients particularly in need.

Their calculations seem not to  have taken into account reductions in:

  • costs of treating severe side effects such as anemia
  • costs of treating progressive and advanced liver disease — End stage liver disease patients incur average annual costs of $59,995
  • costs of treating liver cancer ( the #2 cause of cancer death globally) — $112K annually
  • costs of liver transplant — $more than $500,000 to start, and then high annual costs for medication and monitoring
  • absenteeism
  • presenteeism
  • caregiver lost income and other expenses

Their decision also seems not to have taken into account ethics or morality either. Their main argument is that lots of people need treatment.  There is no other infectious, communicable disease that we deliberately choose, as a matter or policy, to not cure.

My only conclusion is that payors have decided that liver patients are not worth treating. They are saying that the grandfathers, grandmothers, mothers, fathers, sisters, brothers with hepatitis C ( 2/3 are Baby Boomers) are just not worth saving.  What are you saying with your silence?

Tweet: #HCVmedaccess4all

Support our  awareness campaign: https://www.booster.com/hcvmedaccess4all

Look for more information coming: www.globalliver.org

Resources:

FDA Consumer Update: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm405642.htm

Payor, not Patient-Focused Narrative  http://www.washingtonpost.com/blogs/wonkblog/wp/2014/07/24/the-drug-thats-forcing-americas-most-important-and-uncomfortable-health-care-debate/

Price Limiting Coverage http://www.bloomberg.com/news/2014-03-05/hepatitis-c-drug-price-limiting-state-medicaid-approvals.html

Disproportionately affects African Americans and the poor http://annals.org/article.aspx?articleid=1834167

 

 

 

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.

A Patient Summer

September 3rd, 2013

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.”  Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.”

–          2 Corinthians 12:9

 

I have had an unusual summer, at least for me.  I took time off.  I unburdened myself of most work and all volunteer obligations.  Reset my family expectations of me (and mine of myself). I would like to say that wise acknowledgement of the need for life balance led me to this place, but in fact I had no choice.  After a spring of declining health and a hospitalization, I needed to focus on regaining my strength and rebuilding my health.

Thanks to my hematologist/oncologist, who, because he deals mostly with cancer patients seems more focused on supporting patients through treatment in a holistic way than my other doctors, set me up with home nursing care including IV fluids and iron, I was able to function again while waiting for my new biologics to start kicking in.  I cannot say enough good things about home health care – attentive, responsive, convenient, safer from an infection control standpoint, and much more cost-effective.  The two months of home health cost me and my insurance company less than $500 compared to the $7,000 that the 1.5 days in the ER and “observation room” in the hospital where I received the same interventions.

Of course, as a recovering patient advocate, now feeling a bit more spry, although slightly limited by my midline catheter for prolonged IV access, and with time on my hands, I could turn my attention to reforming the system that landed me, a highly activated adherent patient, in the hospital in the first place.  Thank you to everyone who read my May 14 post, Cumulative Burden.  Consider this the next chapter.

I wrote a lengthy letter to my hospital, detailing (respectfully) my specific concerns about safety, infection control, HIPAA violations, access and use of data, and communication loops, with my recommendations, and after giving my gastroenterologist the courtesy of reading it first, I hand-delivered the letter to the chief of medicine and the heads of transplant and GI. And then I waited, and waited for a response that never came.

Ok, so the first letter I had started “as an unsatisfied patient of your GI, transplant, and immunology services . . .” The second letter, sent after being ignored for 35 days, began, “as an attorney with a significant social media presence . . . I will require your response on [date] by 5:00 pm EDT”, and was sent to the CEOs of the hospital and hospital system. That got a response.  Why, though, did it need to go that far?  And aren’t they lucky that I was (and am) more interested in collaborating to improve care for myself and other patients than in exposing and shaming them for shoddy care?

Note to hospital execs: If you get a letter like this.  Answer it! Pick up the phone and call the patient or patient family member who took the time to write and gain a potential brand ambassador (and avoid a potential lawsuit and PR crisis to boot).

With this new  dialogue, we have been able to establish the following:

  1. Yes, I was put in the “observation room” inappropriately given my immunosuppression status and need for bathroom access.
  2. Yes, the way that the “observation room” adjoins to the resident’s conference room where they are putting together treatment plans for all the patients on the floor does pose HIPAA problems since the patient in the “observation room” can hear everything.
  3. Yes, I could have been admitted directly to the floor, saving the ER costs and infection exposure.
  4. No, there are no patients on the board of the hospital or hospital system. (That will have to change.)
  5. No, there is no patient and family advisory council, although there was just a launch meeting to develop one. (Yes, I do plan to be on it!)
  6. Yes, a new patient advocacy VP has just been hired with experience from the hospitality industry as well as a hospital background. (I will be meeting with her in October.)
  7. Yes, we can find a way to bring all my doctors together in one place and time to discuss an integrated care plan for me. (This is scheduled for next Monday so stay tuned.)

So as I face the fall, this post-Labor Day concentration of activity until Thanksgiving, healthy enough to win the Tour de France (no yellow jersey for me, though, given the load of banned substances flowing through me), I take with me from this summer a few lessons:

–          Just say no. It is ok to take a step back to be able to take 2 steps forward.  Everything will not fall apart if I say no to commitments for a while.

–          Patient advocacy begins at home.  I need to press my medical “team” to work better together and not be satisfied until we have optimized my health, not simply accept being out of crisis or functioning ok.  Home health may also need to be a continuing option and I am not ashamed to use it if I need it, rather than soldier on suboptimally.  Only when I am in great health can I be of great use to the larger patient community.

–          Don’t take no for an answer. If the system does not work for a patient like me, it is certainly not working for other patients with fewer financial, time, or health literacy resources.  Once I stopped glossing over the gaps in care (because my physician husband and I could fill many of them ourselves for me and I wanted to move on to do other things) I was able to see how to truly be helpful to other patients at my institution and respectfully, I cannot let the doctors and hospital execs refuse to change and improve or slow-walk the process. Its time has come.  People’s lives depend on it.

Cumulative Burden: The real barrier to adherence for complex patients?

May 14th, 2013

Cumulative Burden: The real barrier to adherence for complex patients?

Or Confessions of an Engaged Patient

Recently I participated in an excellent meeting whose primary theme was patient adherence. ( Patient Summit USA 2013  ) Thankfully the other speakers, whether they were from pharmaceutical companies or solution providers had all moved beyond the notion that “patients forget to take their medication” and that adherence can be solved by fancy pill caps or bottles; yet I was struck after many small group conversations that we had not yet gotten to the point of where we appreciate the total adherence picture for a patient, particularly those on multiple therapies, possibly for multiple conditions and the fact that adherence to an integrated lifestyle of disease management, not just to taking medication is a necessary predicate for successful health outcomes.

I had even more time to think about this after a few days in the hospital last week due, not to non-adherence to my prescriptions (of which I only had two for much of the past few years), but to non-adherence to an integrated, multi-factoral lifestyle plan (there wasn’t one) and resulting unsustainable deterioration of health.

Mind you, the usual suspects of non-adherence — literacy, numeracy, health literacy, language, “patient activation” are not issues here.  The true culprits in my case, and for many other patients juggling serious health conditions with full lives, were communication, time, focus, discipline, ability to outsource tasks (money, support network), physical accessibility (travel-friendly habits and tools), and fatigue (physical and mental) from the sheer number and diversity of health tasks my conditions necessitate – cumulative patient burden.

Here is a list of what I am doing so as to avoid another overnight stay in my friendly neighborhood academic medical center.  Note: I have active Crohn’s Disease and am post- liver transplant.

 Must do (daily):

  • Take  1 prednisone (before 9am)
  • Take  3 prograf (2 times/day)
  • Take iron (3 times/day) figure out most absorbable form – liquid, liquid cap
  • Drink at least 80 oz of fluid, the majority of which in the form of osmotically appropriate (Gatorade, Ensure clear) drinks, not just water since I have no colon and thus absorption issues
  • (1)Shop for, (2)plan, (3)prepare and (4) eat 4-6 small meals which include cooked vegetables, specific bulk producing fruits, low fiber, low/no dairy, low fat, medium protein (ok I get my groceries delivered, but figuring out what to eat and finding time to cook and eat are still challenges, particularly when I am travelling)
  • Record symptoms in mobile app (8-10 times per day) otherwise we have no real basis to ascertain if any of this is working

Must do (non-daily):

  • Schedule appointments for bloodwork (I often avoid this by walking in to a nearby Labcorp)
  • Travel to appointments for bloodwork
  • Schedule appointments for arenesp shots
  • Refill and schedule delivery of Humira pens (new)
  • Be home to receive shipment of Humira which needs to be iced (new)
  • Take Humira on schedule (“luckily” having gone through IVF, subcutaneous injections are not a problem)

Important to do: (you might say these are must do as well, and I agree, but if I had to triage . . .)

  • Take multivitamin
  • Take calcium
  • Take fish oil
  • Take vitamin D3
  • Take B-vitamin
  • Take Zinc
  • Take Magnesium
  • Drink powered fiber mixed in water
  • Schedule follow up appointments with doctors (primary care, GI, transplant, immunology, dermatology, orthopedics, hematology)
  • Prepare for and travel to appointments with doctors
  • Get additional tests and procedures – (1) schedule (2) prepare (3) travel (4) participate
  • Colonoscopy (1-2/year)
  • Pap (1-2/year, follow up for abnormal)
  • Mammogram
  • Dexa
  • X-rays or other imaging (variable, usually 2-3/year of some sort)

Nice to do:

  • Exercise (BMI of 20 and I take the stairs, so don’t judge)

Life must dos:

  • Work
  • Spouse
  • Friends
  • Family
  • Pets
  • Sleep
  • Personal maintenance
  • House ( I believe a clutter-free environment leads to peace and productivity)

Nice to dos (admittedly seldom dones):

  • Anything fun that needs planning on my part

Sometimes some of the important to dos and even the must-dos don’t get done because doing them all starts to feel like my life and not something to do to facilitate my life. Too much focus on the disease becomes unsustainable after time (what I can do for a week, month, or 6 months, is not usually the same as what I can psychologically sustain over 30 years (since by initial IBD diagnosis).  Also, I have to be pretty healthy to accomplish all of these things, creating an unvirtuous cycle when I am tired. Joy-giving activities form my identity as a person, not just a patient, and in that capacity supports my health as well – they give adherence a point.

My thoughts on solutions?

Note: this is not about education, this is about coordination, process and strategy

  1. Physician communication –with each other, rather than passing me from place to place and looking at me organ by organ or problem by problem. Act as a true, if virtual, medical team.
  2. Physician communication – with me. Clearly my doctors were not listening or paying close enough attention to how quickly I was declining and the toll the symptoms were taking on me in the appointments I had in the past 2 months. Were there additional pieces of information or ways to articulate my symptoms that I could have given them?  We lacked clarity in establishing what an appropriate baseline for wellness was for me and what would trigger action.
  3. Share data – I am a one woman HIE. Even with doctors in the same institution there are gaps in the exchange of data from outpatient offices, inpatient, and imaging.  There seems to be no alerts or analytics applied.  (Why did I have to raise my hand and proactively seek out hematology when my hemoglobin dropped to 8.3?)  Reports from external physicians and my condition-specific mobile app are difficult to integrate into the workflow for consideration.
  4. Integrated lifestyle plan – Note I do not say treatment plan. I had to put the plan above together myself and I doubt that my doctors will give it much more than a nod.  I do need them to sign off.  It would have been great to have had more involvement from them collectively in developing it.
  5. More frequent micro-interventions –I would have benefited from a bag of IV fluid from time to time to avoid major, kidney-threatening dehydration later, or some IV iron and keep me fortified to keep up with the other health maintenance tasks.  I would like to see more of an emphasis on optimizing my health rather than just putting out fires.
  6. Streamline appointment process and number of appointments – Think of each of the things that I have to do, then add multiple attempts to do them. I would love for multiple appointments and procedures to be bundled and scheduled on the same day.
  7. Travel versions of everything – Taking this show on the road is my biggest challenge, so I have been stocking up on non-ecofriendly bottled and  juice box size versions of therapeutic fluids and stashed them in purses and suitcases and I will work on eating.

So I was taking the meds I was prescribed as prescribed and still ended up in the hospital.  Patient adherence discussions that are limited to blister pack containers for one product in pill form or swipes at patients who are not 100% adherent to a drug regimen “even when they have a serious or life threatening condition” are woefully insufficient in understanding, let alone addressing, the true barriers to adherence – patient-physician interactions, polypharmacy with differential timing or conditions, and cumulative patient burden.

See  also Non-compliance and minimally disruptive medicine expert Victor Montori, MD, Mayo  Clinic NonCompliance by Victor Montori, MD

http://minimallydisruptivemedicine.org/

We Are All Doctors

July 21st, 2012

Well of course we are not all doctors.  What a ludicrous statement.  Just because I have changed a band-aid, taken a temperature, “diagnosed” a headache and appropriately treated with an acetaminophen, and even clipped an in-grown toe-nail does not make me a healthcare professional.  I do not have the education, training, and experience that would entitle me to be called a doctor, nor would I be able to provide the insights and informed perspective of a doctor.

Yet, in meeting after meeting lately I hear the statement “We are all patients” made to justify people who have not lived with a chronic illness, not been hospitalized, not experienced the fear, confusion, frustration and urgency born from navigating and confronting a serious disease, shaping policy and health system change on behalf of patients.  I believe that this is as ludicrous and dangerous as my attempting to channel the physician perspective without having lived the physician or healthcare professional experience.

I would like to see how far we would get if we tried to put together a panel on “The Physician Perspective on Health Care Reform” with only patients and patient advocates, shrug that we could not find a doctor to speak (They are too busy after all, and we wouldn’t want to put any more burdens on them), or that it was too hard to choose among just one specialty, but excuse our omission because the panelists chosen know doctors, have spoken with them, maybe even did a focus group with doctors so feel perfectly qualified to speak on their behalf.  That clearly would not be tolerated.  So why are we content to go through the charade of  discussing or designing healthcare without including the people most affected by healthcare and with the most knowledge about and incentive to fix the gaps, needs, and impact of healthcare challenges and failures?

I understand the well-meaning attempt to broaden the group of people focused on healthcare issues motivating many who wave the “we are all patients” flag, but there is a difference between having an interest or future stake in a high-quality healthcare system and having the experience that qualifies you to play a meaningful role in shaping that system.  Patients who have earned that experience the hard way should not be devalued or disrespected by lumping them in with everyone who has had an annual physical in the same way a leading neurologist’s expertise would never be compared to someone who watched a documentary on the brain.

PCORI National Patient and Stakeholder Dialogue

February 27th, 2012

Today the Patient Centered Outcomes Research Institute held a National Patient and Stakeholder Dialogue at the National Press Club. #pcoridialogue

The purpose of this meeting was to facilitate discussion and hear public comment on the draft National Priorities and Research Agenda. http://www.pcori.org/assets/PCORI-Draft-National-Priorities-and-Research-Agenda.pdf   This continues the laudable pattern of public and patient engagement that has distinguished PCORI under Executive Director, Joe Selby, the perfect Beltway outsider (IMHO) for this non-traditional entity charged with doing things differently.  I loved that COO, Anne Beal was live tweeting from the meeting and reviewing comments in real time. @anne_beal   @acbeal

The new Director and Deputy Director for Patient Engagement, Judith Glanz and Sue Sheridan were also introduced.  http://www.pcori.org/2012/engagement-team/

The agenda included  two panels  — the first featuring representatives of patient and caregiver advocacy organizations and the second clinician and business representatives – followed by 3 ½ hours of public comment.

One early observation was that there was no patient panel.  A distinction between consumers/public, patients, and patient advocacy organizations was made several times and hopefully will be better reflected in future meetings.  While I understand the concerns with selecting patient speakers for a panel, rather than comment – how do you select a few to represent many?  How do you ensure that patients stick to the rules of engagement for the meeting and provide remarks that are appropriate and productive? – if PCORI which is specifically tasked with engaging patients at every level won’t make the effort to construct a patients’ panel how can we expect any other meeting organizer.  @trishatorrey wrote a great recent blog post borne of her frustrations with this issue.  http://trishatorrey.com/2012/02/26/who-really-is-a-patient-skewed-opinions-result-from-inside-information/

Among emerging resources to help identified qualified patient speakers is Speaker Link http://speakerlink.org/

My key takeaways from the event:

  1. PCORI should be given a great deal of credit in how proactive they are in soliciting patient input, but there is much work to be done in changing the culture of policymaking entities, physicians, researchers and other stakeholders to accept a fully participatory role for patients.
  2. PCORI Board of Governors member Dr. Harlan Krumholz @hmkyale is a passionate speaker on defining authentic patient-centeredness.  He belongs in that rare circle of physicians @tedeytan and @drdannysands  who are capable of playing that essential role of bridging the patient and physicians worlds to catalyze patient-centric change.
  3. There were a number of speakers from trade associations and established interests that criticized PCORI for moving too fast, for iterating documents in parallel, rather than in sequence, and for not specifying (at this stage) the disease states or conditions that will be researched as part of this agenda.    I find this criticism disingenuous, coming from the organizations staffed and most capable of evaluating and commenting quickly.  A cynicism from two decades in Washington leads me to think that the real issue is that there was no one point to lobby for or against in the current construct.  Individual grants from diverse researchers and research communities will bypass the traditional trade association gate.  I think that the current emphasis on mechanisms of patient engagement and high level description of five areas that cross disease states is appropriate given the work that needs to be done in establishing this field and approach to patient engagement in healthcare and healthcare research.
  4. My comments to the agenda include:
    1.  Education (see my post on Research Literacy http://www.dcpatient.us/2012/01/research-literacy-and-the-democratization-of-data/)  should be a precursor to the communication and dissemination of comparative effectiveness research
    2. As PCORI does move into more specific disease states that emphasis be given to research on decision support for patients with complex conditions, comorbidities, rare diseases, and stigma that are currently underrepresented in research and where there are huge gaps in knowledge
    3. Definition of treatment include post-intervention management and issues related to survivorship.

Comments on the agenda are open until March 15, 2012.  Make your voice heard.

I look forward to working with PCORI and the new patient engagement staff to advance the mission of patient-centric ( dare we hope for patient-driven) comparative effectiveness research.

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.

New Year’s Resolutions for E-patients

January 11th, 2012

By this point in January we are all wearing our Fitbits and logging our every mouthful into Lose It!, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates?  I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.

In 2012 I resolve to:

  1. Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients.  (The e-patient version of think global, act local.)
  2.  Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.
  3.   Schedule time to proactively mentor other emerging e-patients (as well as spend time with my e-patient mentors).  Congratulations to all on the Top 10 Healthcare Influencers to Follow List.

Here’s to you being not only more active in 2012, but more actively engaged!

Think of Joining the Society for Participatory Medicine. @S4PM