Posts Tagged ‘patient’

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.

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

April 5th, 2013

See Video:  Patient-Centered Drug Discovery in Liver Cancer

Help Me Spread the Word!  Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Today (April 5, 2013)  I am honored to present at the 3rd Annual CanLiv Research Symposium on Hepatobiliary Cancers, on the topic of “Putting Patients at the Center of Drug Discovery”. CanLiv is a vibrant and vital organization in the liver community, founded by Dr. Melanie B Thomas, Associate Professor, Associate Clinical Director of the Hollings Cancer Center and Grace E. DeWolff Professor of Medical Oncology at the Medical University of South Carolina, to support patients with liver cancer and catalyze new research.

Liver cancer or hepatocellular carcinoma (HCC) is the 5th most common cancer in the world and the 3rd leading cause of cancer death.  Unlike many other cancers in the U.S. liver cancer rates are rising. Yet there is only one FDA-approved medication for liver cancer, sorafenib (nexavar), although for some patients surgical or radiation therapies are appropriate.  Clinicaltrials.gov indicates that there are 741 liver cancer studies currently recruiting patients.  One of the largest limiting factors for finding additional treatment alternatives are the low number of liver cancer patients who are participating in clinical research. Only 3-4% of cancer patients and 1-2% of liver patients participate in clinical trials.

I’d like your help in transforming how patients are involved in clinical research. I want to see participation in clinical research, as agenda-setters, outcome-selectors, study-designers, as well as subjects, become the norm for patients in liver disease ( and all conditions!).  One of the new tools to help do this is Registries for All (Reg4All), www.reg4all.org , a novel patient-controlled online platform for sharing health information with researchers and each other developed by respected non-profit patient advocacy organization Genetic Alliance .  It has already won awards  and started to hit tech publications. http://www.technologyreview.com/news/512456/new-disease-registry-gives-patients-some-privacy/

Most people think that registries are only for bridal or baby shower gifts, but registries, repositories for identified and de-identified health information, have the potential to accelerate the research process.

Reg4All is unique because:

¨  Permission to search, discover, access, use and share any data in the registry is 100% participant-controlled

¨  For all individuals – healthy and all conditions (most registries are siloed and of limited use to someone like me with multiple conditions)

¨  Entering information is fun, instead of tedious due to a gamified survey powered by Traitwise®

¨  Each participant controls his or her information through dynamic granular sharing settings – who, how, when and if data is shared thanks to PrivateAccess™ technology

¨  With the individual’s permission, this data is searchable by researchers in real-time through RecruitSource

Liver cancer, and liver research in general is in need of innovation.  My vision is that it can be transformed from the inside out by patients who are active partners in driving that innovation. Reg4All only realizes its potential if patients embrace it.

¨  Empowering  liver patients by valuing patient-generated health data

¨  Engaging liver patients by providing real-time feedback on comparison to others

¨  Entrusting patients with control over if, when, how, and with whom their health data is shared

¨  Representing the whole person rather than individual conditions and disease states (GI, Liver, Immune, Cancer, Biomarkers)

¨  Enriching and enlarging pool of patients to accelerate recruitment through community participation

¨  Reducing frustration and complexity of finding trials

Please help spread the word, particularly to patient advocates, liver and liver cancer patients.  Mention Reg4All in all of your communication vehicles Friday and moving forward.

Thank you!

Twitter:

Liver pts take control of your health data to speed health breakthroughs, B discovered 4 clinical trials.  www.Reg4All.org #Reg4All #CanLiv

Facebook/Online Communities:

Friday April 5th patients and family members living with liver disease are invited to try Registries for All (Reg4All) to share their health information, discover clinical research opportunities, and speed innovation in drug discovery for liver diseases.

Reg4All is unique in 2 ways:

1. It operates across all health and disease conditions. (So more likely to identify research opportunities from correlations between IBD, CF, liver disease, and liver cancers)

 

2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything.

 

Visit www.Reg4All.org

 

Newsletter/Blogs:

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Speeding up the pace of innovation and new drug development is vital for individuals with liver disease.

Research seeks to discover safer, more effective, or easier to tolerate treatments and therapies – therapies that may improve prolong or save your life or patients like you.

Research can’t happen without patients willing to learn more about clinical studies and choosing to participate in studies that are right for them.

As a liver transplant survivor and the former president of the American Liver Foundation, I am excited to partner with Genetic Alliance, a national non-profit advocacy association, to promote a novel solution that makes finding and being found for a clinical trial easier — Registries for All (Reg4All).

If you or a loved one has liver cancer, cirrhosis, hepatitis, and other forms of liver disease, please explore Reg4All so we can all help each other.

Reg4All features TrialsFinder which provides a new, effective way to match individuals who are willing to participate in research with researchers looking for them.  Our top priority is helping you to find research projects that are useful you, making it easy for researchers to find you, while allowing you to control how, when, and if your information is shared.

Please join us in this by visiting www.Reg4all.org

Launch of American Liver Foundation Innovation Council Today

June 8th, 2012

Good morning, Chicago!  Looks like a great day to start something new.

Today is the launch of the American Liver Foundation’s Innovation Council.  (@ALF_USA) Chaired by Dr. Danny Sands (@Dzsands) (@S4PM), Director of Healthcare Business Transformation at Cisco, and Dr. Nancy Reau, Assistant Professor of Medicine at the University of Chicago, the ALF Innovation Council is intended to bring together creative minds from across silos in healthcare to help us solve key problems facing liver disease patients and their families.

The program will also feature a panel of patients discussing their various experiences with liver disease and a presentation of the state of liver disease and treatment today.

If you are reading this blog post, it is likely that you have been unable to join us in person, but we’d still love your input.

Please comment on the four questions below or tweet us this afternoon (we start at 1pm CT) using the hashtag #ALF_IC.    Many thanks to the Innovator companies who are helping to spark our imaginations.

Step One: Detection/Diagnosis : Moderator Nancy Reau, MD

Key Issue/Question: How can we expand the number of patients in rural and underserved communities accurately diagnosed with liver disease?

Innovation Example: OraSure Rapid Test (rapid diagnostic test for HIV and HCV) @OraSureTech

 

Step Two: Newly Diagnosed/Treatment Selection: Moderator Danny Sands, MD

Key Issue/Question: How can we accelerate the understanding of a patient and their family of their diagnosed condition and how they are going to navigate an increasingly complex set of options?

Innovation Example: Inquisit Health (peer-to-peer web platform) @InquisitHealth

 

Step Three: In-Treatment: Moderator John Kontor, MD

Key Issue/Question: How can we optimize therapies by helping patients overcome barriers to adherence?

Innovation Example: Ginger io (smartphone/SMS/adherence and behavior feedback program)

 

Step Four: Survivorship: Donna Cryer, JD @DCpatient

Key Issue/Question: What are the best long term outcomes for liver patients and how do we achieve them?

Innovation Example: Galileo Analytics (data mining and visualization tool)

 

 

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

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?

Patients’ Rights come to the Hospital

January 18th, 2011

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.

Healthcare Productivity – Valuing Patients’ Time

November 22nd, 2010

I write this as I sit on hold for now going on 1:05:50 hours trying to schedule an MRI at Georgetown Hospital.  Yes, I named names. I usually don’t.  But the list of offenses against patientdom by Georgetown now runs so long my head might pop off. They clearly do not value patients time. If I did not need to be seen by an academic medical center, specifically, one with a transplant center, I would be so out of here.

There is much abuzz for the past few months on how HIT can improve hospital workflow and healthcare practitioner productivity. Never once have I heard anyone speak about trying to improve patient productivity. But I guess no one ever considered that my time and those of other patients is valuable.

Let’s consider just this one test.

1.       I was mailed one slip of paper a week after I spoke with my physician– a universal test requisition form. No instructions on how to schedule, when to schedule, where to go, preparation instructions, anything.

2.        I had to call my doctor’s office and request this practical information. On hold only 3 minutes that time.

3.       I call to schedule an appointment. So far this is 1:14:26 and counting.

4.       Assuming I get an appointment (big assumption), I know I need to allow extra time to park because the current parking is woefully inadequate.

(note as I was wrapping up I was finally connected 1:28:44 – no apology. 1st dates/times given were incorrect because of the type of test I need. Then offered 12/21 date – forget egg nog, pass the contrast. So my test ordered 10/29/10 will not be done until 1/10/11. And I have to get renal function tests beforehand – I know what they are for, but no explanation was offered)

5.       There is the wait for the test, usually no relationship to actual appointment time.

6.       I have never yet gotten non –ER lab or other test results back in less than 2 weeks.  Often I have to be proactive about tracking them down with my doctor.

7.       Then I guess we start all over again for whatever treatment is necessary.

By my calculations this will take at least 8 hours of my time not counting the meditation time it will take to recover from the frustration. A full work day’s worth of effort for just one test. Multiply this by millions of patients. Can our economy afford this?

What if:

1.       My doctor’s office (at this same institution mind you) scheduled the appointment for me or could point me to online scheduling options.

2.       Directions, instructions, etc were available online and downloadable.

3.       Any prerequisite tests would be ordered automatically or at least an alert sent up to my doctor that she needs to write an order.

4.       MRI results were available promptly and accessible through a patient portal.

5.       A follow up call or visit was automatically requested/scheduled prompted by the MRI results.

If I hung up I would be labeled a non-compliant patient, not following up on my doctor’s instructions, a bad patient.  What responsibility does the institution have to make healthcare work?

1:39:45 hours

Consumers v Patients

November 1st, 2010

Although often use interchangeably, there are distinctive differences between consumers and patients in the context of healthcare.  Much is made of what to call those of us actively engaged in pursuing and receiving medical care from health professionals and this post does not intend to settle that issue, but after reviewing countless new conferences, pieces of legislation or regulation, coalitions, job titles, and  grant opportunities,  I’ve discerned a shift towards using consumers as the catch-all term to describe what are actually segments with different experiences, needs, views, and behaviors within the healthcare system.  Too often I see the few seats at the table begrudgingly opened to non-physician or non-academician or non-corporate  parties are filled by labor unions, general consumer groups, and organizations whose average members may not have visited a doctor in years. Organizers, though, feel satisfied in checking off the patient representation box.

Consumers, in my personal dictionary, are members of the general public. Consumers may be perfectly healthy (or think they are) with little contact, or desire to be in contact with the medical system.  The term consumer is also associated with rational nonurgent cost and feature comparison activities demonstrated in other industries with more transparent information sharing.

Patients, acute patients for the purposes of this post, are people with some illness or injury necessitating an interaction with the healthcare system.  They are not electively consuming goods or resources, but trying to secure the more effective treatment with the least amount of pain, time, and cost (if there is a choice or information). Their experience with clinical settings and information may be short-lived and soon forgotten.  If there was no error or incidence involved patients may return to their lives without having been significantly shaped or changed.

Patient Warriors, those patients with chronic diseases, diseases that are potentially terminal or that leave life-changing and to whatever degree life-defining marks (visible or invisible), offer something fundamentally different to the conversation.  Experience over 2 decades with 3 conditions at 4 institutions with 5(to the nth power) physicians, nurses, fellows, medical students, and techs is quantitatively and qualitatively richer than that of an acute patient or a consumer.  Their cost calculations are too often, should I buy food or medicine? should I bankrupt my family or save my life? should I pay these medical bills or my mortgage?

There is a great need from a population health perspective to reach all three segments but the approaches and expectations of each should be varied.  Moreover, than cannot be substituted for one another for research, policymaking, or other purposes.

Consider these questions:

Do consumers want access to their personal health records?

What role do patients want to play as part of their healthcare team?

Can patients be experts?

What is the consumer perspective on comparative effectiveness research?

These questions are almost meaningless as asked.  Consumers may not care one whit about access to a personal health record, but it may mean life and death to a patient warrior.  Patients (subject to individual preference and temperament) may want to be informed while a Patient Warrior may want to be perceived as a full partner or have endured for so long they just want the key decisions while they maintain a positive mindset.  Patients may not be interested in becoming an expert. Patient warriors (often E-patients) may spend hundreds or thousands of hours reading, attending medical conferences, questioning other patients and physicians.  Consumers may consider comparative effectiveness research as commonsensical as having Consumer Reports for other products and look forward to cost-savings.  A patient or patient warrior may be skeptical that a personalized treatment option may be made inaccessible to them.

Extent of interaction with the healthcare system and impact of health issues on someone’s life are the defining factors in determining these population segments.  If we really are to solve the myriad of challenges affecting healthcare we can’t afford to be lazy in our language or our thinking about ensuring that all stakeholders are truly considered and engaged appropriately.

Patient ID

October 18th, 2010

Almost everyone is familiar with the paper bracelet that hospitals put on people to mark the change in their status to that of a patient. The bracelet identifies the name, age, admitting physician, and often now includes a barcode with additional data that confirms the medical condition, authorized procedures, and medications. As someone who, if I kept them all, would possess enough hospital patient ID bracelets to make into a garland for a Christmas tree of robust circumference, I can’t wait to gnaw, snip, slip, or cut off that bracelet as soon as I leave the view of the discharge nurse.
I realize that others can not so easily shed their patient identity. Their injuries or disabilities, temporary or permanent, continue to identify them instantly to the world as patients, evoking sympathy, empathy, pity, or simply unwanted attention. I’ve never wanted anyone to pity me, make exceptions, or deny me opportunities that I knew I could manage, simply because of perceived limitations. However, as an adult with a long track record of successfully overcoming the physical and emotional challenges of balancing chronic disease with school, work, life, I’ve started to question why I feel the need to escape or hide from the fact that I live with chronic and sometimes acute health conditions.
Three short vignettes from the past few weeks may help explore this evolution in my patient identification:
1. No blood from my hands
I don’t allow anyone to stick my hands with needles to take blood. I’ve had periods of my life that have necessitated repeated blood draws and IV insertions over the course of days, weeks, or even months. Add a few years on prednisone, a dash of dehydration and I have become what’s called in the trade “a hard stick”. Often the usual spot on the inside of my elbow is uncooperative and the tech, nurse, or phlebotomist starts looking at my hands. Recently in the hospital after explaining for the 3rd time that I don’t allow blood to be taken from my hands, I started to cry. The nurse stopped and gave me the opportunity to explain that my hands are the one unviolated spot on my body after years of medical treatments. They were unscarred. Frankly, I have beautiful hands, manicured hands, long fingers made to play the piano or show off fancy rings. When I left the hospital, I could take off the hospital gown, bracelet, put on long sleeves, and appear again as a “normal” person, a healthy person. I got to be in charge of when I revealed my patient status. If my hands were as bruised, bandaged, or scarred as the rest of me there was no hiding, not even from myself.

2. Donna Cryer – Liver Disease
Picking up my name badge at the registration desk at a workshop for patient representatives for the FDA I was a bit taken aback when I saw that it read Donna Cryer/Liver Disease. I understood the purpose of the identification to help us understand and interact with the other patient reps, but in all the hundreds of events I’ve attended, most on healthcare topics, I’ve never been literally labeled by my disease. Of course in this setting, I expected to be disclosing my conditions early and often, but it was no longer my choice in how I presented myself. Contrast with a visit to my doctor’s new office where the staff mistook me for a drug rep. What greater confirmation of polish and perkiness that that! It might have also spoken to the volume of my medical records I was toting that may have been mistaken for a same case, but I digress . . .

3. DCpatient/Donna Cryer
My business manager made me tweet. Let me explain, I am a lawyer, not only by education or training, but by essential temperament. Social media, self-disclosure, does not come naturally to me. In being pushed to blog, I thought, let me start with Twitter, 140 characters of opinion at a time. Also, rather than Tweet as Donna Cryer, JD, I would create an alterego, DCpatient, my patient identity. This blog quickly followed, but still I had this naïve attitude that I could keep these identities, these worlds, separate. How separate they could ever be since I run a healthcare consulting firm focused on advancing patient issues and perspectives? Still, color me surprised the first time someone recognized me as DCPatient while at an evening event with clients. After the E-Patient Conference in Philadelphia, most everyone was using my “real” name and my “patient” name interchangeably. The firewall was broken.

Yesterday, I redrafted my professional bio to include the words “a liver transplant recipient”. There that designation sits next to my Harvard education and Bar association membership. Wearing my patient identification publicly consistently may take more courage that the daily private struggle of living with my conditions.