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

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.

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

Two recent speaking engagements provided me the opportunity to think deeply about the discharge process, an area of healthcare delivery rampant with errors and missed opportunities to support sustained healing and health for patients. This is an area of keen interest to me as I have experienced the discharge/transition process 16 times ( I may have lost count in there somewhere) as a patient and twice as a caregiver to spouse and parent.

On October 20^th I delivered Grand Rounds at Montgomery General Hospital. My topic was Patients as Partners in Quality Care Improvement.

On October 13^th I had the privilege of being the patient speaker at an event focused on identifying opportunities for technology to improve the transition of patients from acute care settings to home or a rehabilitation or long term care facility.  “Putting the IT in TransITions” was convened by the Office of the National Coordinator for HIT as well as the John A. Hartford Foundation and the Gordon and Betty Moore Foundation in Washington, DC at the Kaiser Permanente Center for Total Health.

The three questions posed were:

1. What are the most important problem statements from the patient’s and caregiver’s perspective that require our attention?

2. Where is IT effectively addressing these challenges now?

3. Where is innovation most needed now?

The invited attendees participated in breakout sessions to brainstorm on the four particular areas of transition:

1. Discharge process

2. Medication reconciliation

3. Information flow and feedback

4. Patient and care-giver activation

Below are some of the key points from my presentation.  The entire webcast can be seen at http://www.visualwebcaster.com/event.asp?id=82572.  (I start at minute 42)

Successful discharge begins at or before admission.

Reducing readmission is based on addressing the totality of the circumstances that a patient encounters when they leave the hospital.

Opportunity 1: Accurate electronic transmission and appropriate exchange of a patient’s medical history, including known allergies and other alerts can aid and speed diagnosis, avoid unnecessary tests and scans, avoid repeating failed treatments, and laser focus on will work. [Tech Op:  Portable Patient Health Record]

Opportunity 2: Sharing information, including lab values, with patients and caregivers in real time creates trust, and leverages the ability of patients and families to spot errors and omissions.  An EMR is only as good as the information is used. [Tech Op:  EMR]

Opportunity 3: Coordinating, accelerating the integration and conflict resolution of information across specialists is an essential HIT function that power to truly impact care and bend the cost curve in the management of complex patients.  As a liver transplant recipient for underlying autoimmune conditions that manifest in GI and other areas I need to get sign off from all groups before discharge.  This has often taken a full days worth of nurse-hours to procure. [Tech Op: EMR]

Opportunity 4: Beginning the education process – nutrition, self-care, new medication regimens – long before the discharge day would provide an opportunity for patients to begin formulating questions for medical staff in a more timely fashion and start the process of strategizing how to adhere. [Tech Op: Ipads loaded with videos, links to Medline, patient disease state communities]

Opportunity 5: Customized, tailored discharge plans can be populated and continuously updated throughout the hospital stay, triggering communications to long term stay or rehabilitation facilities for certain conditions, orders for medications, equipment, even groceries that meet a prescribed dietary change.  Everything a patient needs to do or have for the immediate post-discharge period needs to be ordered, arranged, scheduled and delivered before they leave the hospital. No exceptions.  Patients are sick, tired, happy to finally be home.  Caregivers and sick, tired, happy to finally be home.  They may not be able to leave the patient to run between pharmacy, grocery store, medical supply once they get home.  Follow up calls to physicians and often not made in the return to home life.  Let’s say good bye to the scribbled sheet of paper with vague generic instructions hastily put together in the final hours of a stay.  [Tech Op: E-prescribing, Peapod/Safeway grocery delivery, RHIE to link to appt scheduling]

Opportunity 6:  Provide resources to fill in the gaps for tasks the patient or caregiver would normally have to do at home instead of resting and healing.  A list of or links to childcare, respite care, lawn service, short- term concierge services, would both give permission to rest and help locate appropriate assistance.  Tools to help patient families organize their own communities for support would also be helpful.  There is a lot left on patient family shoulders even for those who have visiting nurses and other clinical support. [Tech Op:  Foursquare, Groupon, Caring Bridge]

None of these scenarios require anything more than technology we have available today. The reality is that transformation of the discharge/transition process will take a combination of change in workflow and culture in addition to technology.

If you are patient/caregiver who has used a technological solution to help with a care transition or a vendor who has or is working on a solution addressing one of these opportunities, please comment and let us all know.

As a dutiful patient, one week prior to my doctor’s appointment I got my requisite blood tests done.   I use Lab Corp instead of going to the hospital lab because I can make convenient appointments online, get email confirmations, and quick access to the results.   In a surprising turn of events I actually received a call from my doctor’s office with the results 3 days later.  I say surprising because normally I have to beg, plead, call, or at least charm a nurse to get my results at all.  The caller announced that the results were “fine”.  Now in 27 years with a chronic disease “fine” is not a word I usually heard in conjunction with my bloodwork, so I asked if I could see them.  (note: every patient should do this)  “OK” was the quick answer.  I could fax or email them to you.  Yee Haw!! Now we were getting somewhere.  Of course there were abnormal results and some tests that should have been conducted that were not  (one way to get “fine” results is apparently to omit tests I don’t do well on), but the liver enzymes were solid.  So, fine.  We discussed the other issues when I got to my appointment.   But let’s not miss the point here people, the big cultural shift, the message received, at least this one institution – I had the right to see my blood test results.

To ensure that all patients, not just the lucky few with enlightened physicians have this crucial information, last week at the launch of the HHS/ONC Consumer Engagement in HIT campaign a proposed rule was announced to allow patients direct access to their results from the lab.  This is an enormous step forward in the annals of patient engagement and participatory medicine.  Please submit comments to make sure that this rule passes at  www.regulations.gov  or by following the directions in the Federal Register Announcement.

HHS Proposed Rule Allowing Direct Access to Lab Results http://www.ofr.gov/%28X%281%29S%28cp53mc3sjd3cbdfu4r32fhcj%29%29/OFRUpload/OFRData/2011-23525_PI.pdf

Center for Democracy & Technology http://cdt.org/blogs/harley-geiger/139under-proposed-rule-patients-will-receive-clinical-test-results-directly

I have spent the past two rainy days with senior executives from the Adventist Healthcare System and a range of integrative medicine and community leaders as part of an effort called Next Century Health. Next Century Health is a visionary initiative of the Adventist Healthcare System, a  large integrated  network of hospitals, rehab facilities, home health, and other health services, to respond to the key trends and drivers transforming healthcare today in something more than a pro forma fashion.  I, along with such notables as former HHS Secretary Dr. Louis Sullivan, former FDA Commissioner Dr. David Kessler, and former Senator Dr. Bill Frist, are committed members of the Next Century Health Leadership Council.  Below are 5 reasons I think that Next Century Health may actually achieve its ambitious goal of advancing whole-person health and healing across the greater community.

1. It’s in their culture.  The Adventist HealthCare System has its roots in the Battlecreek, Michigan  health resort of Kellogg’s corn flakes fame.  It flourished with a focus on connected mind, body, and spirit for healing purposes.  Discussions of whole-person health and well-being are authentically part of their DNA as an organization.
2. They have a track record.  The five-year and counting Center for Health Disparities established by Adventist is a create model of addressing tough issues, working with community leaders, and keeping long-term commitments.
3. Vision before bricks and mortar. The system has several large-scale building projects in the works, including a massive White Oak Campus adjacent to the FDA.  Integrating elements into every building and campus expansion plan that actively promote fitness, restoration, and connection from the start rather than as an afterthought greatly increases their chances of adoption and execution.
4. Partnership, Structure, and Sustainability.  The two days of discussion included very tactical and tangible planning for the best partnerships, structures, communication loops, and policies to sustain the effort for decades.  This could have been so easily just a PR opportunity, but the time commitment of the hospital and system presidents to a multi-hour roll-up-your-sleeves  brainstorming and options weighing lent a great deal of credibility.
5. Stewardship.  The second day of the Next Century Health meeting was a forum on Whole Person Health, Scientific Advancements & Ending Obesity with panelists including former AARP CEO Bill Novelli and Partnership for a Healthier America CEO Larry Soler.  A robust conversation on the root causes and potential solutions  (active, passive, and sanction-based) for the obesity crisis was held for several hours, but what impacted me most was the last comment of the morning, made by Dr. Alan Handysides, Director of the Department of Health Ministries, and a member of the Next Century Health Leadership Council, that core to the Adventist approach is the belief that stewardship of health has value.  From roots that strong a mighty tree can grow.

Learn more about Next Century Health at http://www.nextcenturyhealth.org/

In my estimation, the FDA does the best job of any federal agency of effectively supporting and leveraging empowered patients in meaningful ways.

Here is a great example:
If you are interested in learning more about how the FDA develops and regulates drugs and meet the actual people involved please consider registering for this Patient Network Conference. Registration is free!

Dear Patient Advocacy Community,

The Food and Drug Administration’s Office of Special Health Issues is sponsoring a Patient Network Conference that will take place on Friday, July 15th, 2011, from 8:00 a.m. to 5:00 p.m. at the FDA Campus at White Oak. The address for the FDA Campus is 10903 New Hampshire Avenue, Building 31 Great Room, Silver Spring, MD, 20993.

This conference will include sessions addressing a variety of topics for the oncology patient advocacy community including drug, biologic, and device development and regulatory processes as well as interactive sessions with management from the Office of Oncology Drug Products in the Center for Drug Evaluation and Research. Attached is a draft agenda.

Seating for the conference will be limited to the first 150 persons. The conference will also be available via live webcast. The web link for this will be provided closer to the conference date.

To register for the conference, please send an email to: PatientNetworkConferenceatfda.hhs.gov with the following information:

First Name:
Last Name:
Organization:
Preferred Attendance: In Person or Webinar
Current Role:
- FDA Patient Representative
- Patient Advocacy Group
- Patient / Survivor
- Other

For directions, parking, and local lodging information, please refer to the following website:
http://www.fda.gov/AboutFDA/WorkingatFDA/BuildingsandFacilities/WhiteOakCampusInformation/ucm241740.htm

Best Regards,
FDA Patient Network Conference Team

The remarks below are a distillation of my presentation at the April 14, 2011 Patients as Partners in Care: Engaging Patients through Health IT event at the National Press Club hosted by RTI International. I was privileged to share the panel with Dr. Edward Glynn, Ambulatory Medical Director of Informatics, Bon Secours Health System; Lygeia Ricciardi, the 1st senior advisor for Consumer e-health, Office of the National Coordinator, Health & Human Services; Ann Bartlett, a patient and brilliant diabetes blogger for Health Central; Drs. Jonathan Wald and Douglas Kamerow, both of RTI International.

Thank yous to @CindyThroop now at RTI for the invitation, @ReginaHolliday for her real-time artistry, and @HITgreg from Clinovations for live-tweeting these concepts.

Myth One: “Potato/Patato”
The most fundamental myth when discussing patient engagement is assuming that patients and consumers are interchangeable when asking the question what a segment of the population wants from HIT. As I described in a previous post Consumers vs. Patients, the needs, preferences, and intensity varies with frequency of interaction with the healthcare system among other factors. Allow me to use the following analogy. What do you want from a camera? If you are Annie Lebovitz you’ll make a very detailed request involving aperture, shutter speed, lens exchangability, etc. If you ask me, a person who takes perhaps 5 photos a year that never seem to make it out of my computer, I would say that any old thing would do or really not contribute much to the discussion. Likewise, the input from experienced patients, those with chronic diseases whose lives depend on accurate, complete and timely exchange of data between and with their healthcare providers is an entirely different from the input of feedback of consumers or people with more limited needs. You only need an HIT solution if you have a problem.

Myth Two: “If we build it they will come”
Most HIT vendors have a field of dreams mentality, “If we build it they will come”; making no attempt at patient engagement in the design of HIT systems, or mistakenly trying to get input on technical aspects rather than end user experience and functionality goals.  Vendors and health system purchasers are now either frustrated with patients for not fully utilizing the available portals or tools, or are scrambling to start consumer engagement initiatives, usually again without having patients involved in designing the initiatives.  Meaningful engagement leads to meaningful use.

Myth Three: “Just say no”
A very pervasive myth is that patients are only concerned about data privacy and are opposed to sharing of data. The consequence of this erroneous assumption is that patients are not afforded the rights to manage their data and affirmatively select their privacy options, for fear that the population health, research and other benefits of using aggregated deidentified data will be lost. Two points – (1) patient care about many things other than privacy, and different patients have difference privacy preferences. Patients also care about accuracy, convenience, interoperability, safety, efficiency, priority and quality. (See What Patients Want from HIT). (2) It astounds me that there has not been any large scale educational campaign to the public or through patient advocacy organizations to educate on the potential and promise of HIT are, so that when patients are confronted with the choice to share information, they understand the implications.

Myth Four: “Look but don’t touch”
I applaud those institutions  that have set up a patient portal or otherwise allowed patients access to view their EMR either in whole or in part. However, as any patient who has looked at their records can tell you there are often inaccuracies, gaps, or redundancies that make the record misleading or downright dangerous. Additionally there is a wealth of patient generated data from mobile apps, diagnostic devices, and old-fashioned patient self-management notes that can potential inform care that never enters the formal EMR. It seems to me that that position that provider controlled EMRs with no mechanism for patients to enter or alter data are the only way to maintain data integrity misses a huge opportunity to harness patients as partners in correcting information and ensuring that all relevant information is in fact captured.

Myth Five: “It’s not for you”
Just as the whole notion of e-patient activism has come under fire for being the domain of only an elite segment of tech-savvy individuals, many claim that HIT does not serve low income or minority populations. Organizations such as the National Health IT Collaborative for the Underserved, One Economy and other are making sure that the digital divide does not carry over into the health arena. Moreover, capitalizing on technology like cellphones, already enjoying a high penetration in communities, health campaigns like Text4Baby are proving highly successful. Early data from a Morehouse School of Medicine study E-Healthy Strides Application© for Interactive consumer driven diabetes self-management sponsored by the Microsoft ™ Be Well Initiative demonstrate an opportunity to successfully overcome barriers to HIT use among African American patients.

What other misplaced or misleading assumptions do YOU think are frequently made about patients’ views and potential for engagement with HIT?

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?

There is sometimes a mismatch these days between the expectations that empowered patients have and the experiences they encounter in the hospital or other care settings. Great hospitals will recognize that respecting patients’ rights is not necessarily at odds with quality care but an integral part. Although we live in an overly litigious society, if we view patients’ rights as really the culmination of the Golden Rule, Quality Care and Common Sense, I believe that we can find a middle ground that respects the rights of both patients and providers. Every nurse, physician and hospital executive should ask themselves would they be satisfied being a patient in their own facility.