Posts Tagged ‘patient engagement’

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

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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.

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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?

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