While in NYC for business I received a call from my mother that my father had been admitted to the hospital. I raced home to Connecticut arriving at the hospital to find my father on a gurney in the hallway, pale and connected to oxygen and other tubing, waiting to be wheeled down to testing. I leaned over to kiss his cheek and let him know I was there.

So began my transition from DCpatient to CTcaregiver.

I’ve spent the bulk of the past two weeks trying to coordinate care for my father and support my mother as they struggled to understand and adapt to this health crisis and what it means moving forward. Now was the time to see if I could actually apply all the fancy patient advocacy talk and e-patientism to a situation closer to home.

1st Lesson: Being a caregiver is much harder than being a patient. You get no meds and never get to lie down.

2nd Lesson: Education is not Empowerment.
My parents are very smart people. My mother has a PhD and my father has 2 masters degrees. They are retired teachers – my father taught life science. Still the amount of detailed information on the myriad conditions that my father was battling and the pace and format at which this information was given was overwhelming. Also, information was also given without context. For example, in the huge package of information there was a list of the sodium levels of different foods. BFD. What was the recommended goal for how much sodium he should have each day? What should be the limits for sodium per serving he looks for on labels? My task was not to give them more information (although my husband and I were looking up drug information and clinical guidelines on our phones from the hospital room) but to give them tools to help them digest the information and apply it to their lives.

3rd Lesson: Fragmentation of the healthcare system can kill ya.
Now I knew this from my own experience, but since I have the ability to compensate for the gaps and uncoordination of medical care in my own situation, I did not truly appreciate the potential consequences of not getting it right. The most important and impactful things I did while I was with my parents was to get support services in place from the Visiting Nurses Service, schedule follow up appointments with all of their doctors, and to ensure that follow up testing was ordered, conducted, and shared in a timely fashion. My Dad is on coumadin for example, but the order for the INR (the test to see if his blood is being appropriately thinned to avoid clots but not too much) was not given, and then they expected him to travel to the office to have it drawn. IMHO all of this should have been done before discharge.

I could go on and I’m sure I’ll write about this more, but let me leave this post with . . .
Five Things Hospitals Can Do to Make it Easier for Caregivers, Reduce Readmissions, and Improve Patient Care:
1. Upon admission, prompt for ALL doctor’s names and ALL medication. Have a mechanism to alert all a patient’s doctors that the patient has been admitted. My Dad had eye drops that were counterindicated with his blood pressure meds and the ophthalmologist and cardiologist never knew of each other.
2. Proactively provide timely information and updates to family twice a day. (Luckily I knew enough to skulk around the nurses’ station well before posted visiting hours spotting anyone in a white coat or tie who handled my father’s chart to corner them into an update and plan for treatment. It shouldn’t be that hard.)
3. Conduct training. Don’t just give pamphlets before discharge. God bless my 70-something year old mother for figuring out how to wrangle my Dad’s oxygen tank and foley catheter into the car. Good luck trying to get my transplanted southern African-American parents to instantly transition to a low sodium, low fat, complex carb diet without significant intervention.
4. Schedule all follow up and have prescriptions ready upon discharge. The caregiver may not be able to leave the patient to pick up prescriptions and has too much on their hands to play round robins on the phone with multiple providers.
5. Finally, I’d like to request a 24 hour cafeteria. I appreciate the thought of the “Vending Café’”, but I’m never going to order a seafood salad sandwich from a vending machine and I don’t want to end up in the bed next to my Dad because I passed out from hypoglycemia. Caregivers need their strength to shoulder all the burdens laid there by the healthcare system.

National Family Caregivers Association http://www.nfcacares.org/

National Transitions of Care Coordination http://www.ntocc.org/

The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.

If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.

The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.

My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.

This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.

http://www.newsweek.com/id/230061

I remember reading President John F. Kennedy’s Profiles in Courage when I was a girl and being inspired by the recounting of Senators standing up to colleagues and constituents alike to speak out and vote on principle for what they thought was in the highest interest of the nation. Courage was the word that has most frequently come to mind with the passage of the Patient Protection and Affordable Care Act, better known and the Health Reform Bill, Sunday night in the House of Representatives. Despite levels of vitriol not seen since the Civil Rights Movement of the 1960s, complete with shouting, spitting, and name-calling outside and inside the Chamber, Democratic members of Congress came together to lead. With this bill the administration made a statement about who we are as a nation, as a people, a nation that cares and supports all its citizens, a nation that understands that a foundation of health is necessary for enjoyment of all our constitutional rights and the many privileges of living and working in this great country, a nation that can find money for peace as well as war.

Some say that this is a government take-over of healthcare. It is not. Insurance companies, drug manufacturers, and hospitals are still standing and benefit from more insured. Small businesses are key beneficiaries and there will greater opportunities for job mobility without fear of losing and never regaining insurance coverage one can afford. Patients benefit. Almost all of us will have a “pre-existing condition” if we live long enough.

Some say it costs too much. How much is too much for health? Ralph Waldo Emerson once said that “The first wealth is health”. We would do well to remember that. Do we need to do more to reduce (not just shift) costs of healthcare while maintaining/improving quality? Yes. However, one bill is not required to do all things.
If the purpose of government in a capitalistic, constitutional democracy is to do collectively what we cannot do individually to ensure a strong, stable and prosperous country then this Democratic Congress has done its job. They have my vote not only in the next election, but for the next edition of Profiles in Courage.

I had a call this morning with the head of a huge initiative in healthcare that invited the patient perspective into the process in the fourth year of the effort, despite the prominence of the term patient-centered in their name.  One of the reasons was that, “patients were hard to find”.  Now I know what she meant – she wanted patients who were able to speak beyond the specifics of their personal experience and had the professional skills and demeanor to go toe to toe with physicians, hospitals, and other business executives.  She wanted qualified patients.

I had a sense of déjà vu.  This felt to me much like the corporate recruiter lamenting that qualified Black candidates were so hard to find.   They then proceed to use the same handful for all board positions or job openings.  Now I see both educated, talented African Americans and articulate patient advocates everywhere I go ( not necessarily in the same places) so I thought I could use the same techniques to offer them to the corporate and policymaking worlds.

The best way to find qualified Black candidates is to (1) ask current Black executives to recommend some and (2) go where African Americans congregate.  Likewise, it seems the way to identify and attract patients willing to speak and serve on behalf of other patients is to (1) ask active patient advocates (and I don’t just mean the CEOs of patient advocacy organizations who may be excellent professional association managers, but may not be able to articulate the visceral experience of someone living with or having survived a condition) and (2) go where patients go – hospitals, doctors offices, and yes, online.

So I’m asking you.  Are you in?  Will you step up yourself or pass this message along to others you know who may be appropriate?  Please send your name and bio or resume to me at dcpatient@dcpatient.us if you’d like to be part of the Patient’s Bureau I’m creating to serve as a referral source to conference planners, policy committees, and government agencies so no one can ever again have an excuse not to include the patient perspective.  I’ll also do a follow up post listing those names I am permitted to name so word gets out.

Thank you!

As the 4^th major storm this season hits Washington, DC I received an email (thankfully I still have power) from the National Kidney Foundation calling for drivers of 4x4s to help transport dialysis patients. Six thousand patients need dialysis in the DC area alone.  Possessing a small vehicle woefully unsuited for the task I could not help directly, but it made me think about what these crises mean for patients who rely on hospital-based services, or simply electricity and heat to be able to manage their conditions.

What can patients do to ensure that they have access to care during emergencies?

1. Have extra medication on hand.  You may not be able to get that refill by mail order or even from the pharmacy across the street.
2. Have your own backup plan. Contact a neighbor, family member, or work with your hospital social worker to proactively identify a volunteer to check on you, drive you for care, or provide a warm place to stay overnight and plug in your equipment.
3. Ask your doctor or healthcare team if home dialysis or temporary home-based care is appropriate for you so you don’t have to leave your house in unsafe circumstances. Do your family members know how to administer your shots or IVs?  Get them trained!

Those of us with chronic conditions are accustomed to making plans when we travel.  I now realize that we need to be as diligent when we are at home.

Volunteer to help Dialysis Patients

The unexpected happened and Massachusetts elected a Republican to the Senate seat long held by Democratic lion, Ted Kennedy.  Beyond the far-reaching implications for BOTH parties as to how this instructs them to respond the electorate, Scott Brown’s election breaks the fragile 60 vote Democratic Caucus in the Senate, putting healthcare reform as we have come to know it in dire peril.

Many, including myself, do not think that this is a bad thing necessarily. What if we had to start from scratch?  What if we unraveled all the convoluted provisions and the waivers and side deals connected to them and created a bill that truly reflected the needs of patients and healthcare practitioners?  What would this look like?  We’ve come so far away from first principles that it may be hard to recall or recapture, but here’s my short list.

1. Real cost savings – Few things actually reduce overall costs in healthcare rather than just shift them.  A new healthcare bill should include a) Medical malpractice reform, and b) Payment based on a coordinated care model.
2. Expanded coverage – We will never get to 100% without automatic universal coverage so stop using that as a goal if we don’t plan to go that far.  We would be able to get closer, more easily by raising the income and category limits on Medicaid and lower age limits to buy into Medicare.  Incentives for small businesses, tax deduction for individual coverage, and allowing children to stay on their parents policies until age 26 would make a significant difference.
3. Meaningful coverage – accept the insurance company proffer to eliminate pre-existing conditions, guarantee issue, remove lifetime caps, etc.
4. Improved quality – See 1 and add supporting practices of all sizes to adopt and use electronic medical records (with patient access to their data) and accelerated translation (uptake and adoption) of evidence-based medicine.

Then walk away. Put the pen down. Leave the exchanges, mandates, Louisiana Purchase, state opt-outs in the dust bin of history and bask in the feeling of getting something done.

The end of 2009 and beginning of this year have been spent on determining how pharmaceutical companies in particular and corporations in general can engage effectively and appropriately with consumers and patients in online environments whether social media or static.

Lost in the conversation is that pharma has not yet perfected how to engage effectively and appropriately consistently in the real world with patient groups and communities.  As my basketball coach/father would always say, “Never forget the fundamentals”.

I believe the fundamentals of working with patient groups and communities (as well as their physician counterparts)  can be captured by my three R’s of strategic alliance development.

Strategic alliance development is the cultivation and active engagement with select stakeholders in a manner that is (1) relevant (2) respectful, and (3) recurrent.

Relevant – Engage in a fashion that reflects you understand what the mission, priorities, and capabilities of the organization.  What are the needs, gaps, and concerns of that patient population?  Make sure your science, messaging, and outreach meets those.  Likewise, relevant organizations and opinion leaders will be those that have the visibility, credibility, and capacity to advance your specific business objectives.  Every organization is not an appropriate partner for every objective.

Respectful – Patient groups are not waiting to do your bidding and patient advocates and association leaders are important players in healthcare.  Organizations are often eager to co-create meaningful programs, events, and informational experiences when treated as full partners or leaders of the process. Also, don’t send junior marketing people or your agency minions to senior level meetings.  Vice president-level or medical affairs participation may be necessary to demonstrate a serious commitment and substantive intent.

Recurrent – Frequent and consistent interactions and communications are valued by patient groups beyond financial contributions and differentiate mere corporate sponsors from true community members.

The ultimate goal in strategic alliance development is to be valued by the community as a member of the community. Membership validation translates into positive market share and share of voice.

Let’s get it right in the real world 1^st.

Three things neatly intersected to compel me to write this blog post:

1. Reading How Doctor’s Think by Jerome Groopman which I strongly urge every patient to read and then send copies to all your physicians to create the most productive healthcare partnerships.
2. Time spent with the leadership of the American College of Physicians Foundation.  The ACP is a founding member of the Patient-Centered Medical Home initiative and is very thoughtful about how physician practices can better serve patient needs and improve outcomes.
3. Preparing to be interviewed for the Chaos Solutions Blog Talk Radio show, my 1^st foray into this medium. http://www.blogtalkradio.com/chaossolutions

Far from being a nerve-wracking event I believe that visits to the doctor’s office can be an empowering experience and an essential step to living the fullest, healthiest life possible.

My recommendations involve the 3 O’s – Observe, Organize, and Obtain.

1. Observe yourself for at least a week (women perhaps a month or whole menstrual cycle) before your visit.
   • What are you eating and how is your body reacting?
   • How are you sleeping?
   • Do you get out of breathe going up the stairs?
   • Do you have swelling or other body changes?

These are all important to note and bring into the conversation with your doctor.

2.  Organize, Organize, Organize

• Bring a list of all your medications, with names (brand and generic) dosages.  Include vitamins, supplements, and herbs.
• Bring a list of all your doctors and complementary medicine specialists as well
• Bring a full medical history (don’t rely on your memory for what year for which surgery and the results)
• Bring a family medical history
• Create a list of your key questions and concerns

3. Obtain

• DO NOT LEAVE without instructions and prescriptions for any new medications
• DO NOT LEAVE without test slips, referral forms, and directions ( fasting, other prep)
• DO NOT LEAVE without a nurse or other number to call if you have questions

Become an engaged, empowered patient and make the most of your doctor’s visits!

Since I have great confidence in my fellow bloggers and all the fabulous Twitterati who followed today’s second day of the FDA Public Hearing on Social Media to provide detailed summaries of the day, I will take a different direction and offer my perspective as a patient on the hearing and the FDA’s  as well as pharmaceutical companies’ roles in social media.

I’ve been on branded prescription medication since I was 13 and first diagnosed with ulcerative colitis (inflammatory bowel disease), more for primary sclerosing cholangitis (autoimmune liver disease), more post-liver transplant, well you get the gist, so I have experienced my share of side effects and even a few adverse events and NOT ONCE did I think to make a report to the FDA.  NOT ONCE. Now I’m often chided for not being the average patient, but that further strengthens my argument here.  I’ve presented at NIH and not thought to report, I’ve worked with pharmaceutical companies and never thought to report, I’ve been a member of the Alliance to Strengthen FDA since it’s first year and never thought to report.

Why not? Well, my key concerns at the time were self-centered – what is going on? What is causing this? How can I make it stop?  For many of these answers I do turn to the Internet first, for context –is this normal? expected? will it resolve on its own? is there something simple I can do? —  but for resolution I ask my physician, because only in coordination with my doctor can I make the necessary adjustments or stop taking the medication. Reporting to FDA was not going to change my treatment.  It could have, in retrospect, changed treatment for others in even a more impactful way than sharing my experiences have changed treatment for fellow patients in social media and regular social environments.

Today’s hearing has impressed upon me how much we need a broadscale public relations campaign for FDA MedWatch or whatever new simplified reporting format takes its place.  (And yes, the federal appropriations, not user fees, to allow FDA to  do its many jobs.) Patient forums abound with people who not only want to help themselves, but help all patients standing with and coming behind them.  Social media and online reporting of patient experiences, good and bad, with medications can be a powerful force for improving healthcare by providing information for physicians, public health researchers, as well as regulators to access.

And Pharma – I am interested in the FDA-approved language and data (safety and efficacy)on the branded medications I take being easily accessible on the Internet and understandable.  I am not interested in pharmaceutical advertising, being approached by a pharmaceutical representative, or any overt contact of any kind.   I am happy to have them listen and correct grave misinformation if they believe that the particular forum is not sufficiently self-policing. Medication is not like shoes. I am happy to look at shoe advertising, talk to shoe people, and if the president of Zappos would like to come to my house, I’d bake him a cake.  I take medications because I need them and I’ve worked out a plan with my health care professionals of what, when, and why I will take them.  I welcome tools and information to boost my understanding, adherence, and coping, but I’d prefer if it came through a medical society or patient organization (even if pharma sponsored, I’d feel that it has been reviewed and tailored by people with interests more aligned with mine).

Bottom Line: I’m not as afraid of health social media because I believe in the intelligence, passion, persistence and generosity of my fellow patients (and I still believe in doctors). FDA has a strong role in ensuring that information by regulated entities (under their control or influence) is accurate and meaningful ( my preference over exhaustive) and that reporting mechanisms when there are negative interactions with that material or the products are well known, convenient, simple to fill out andsend.  Pharmaceutical companies and other regulated entities should listen more than talk and only interact to provide value to patients, as defined by patients.

First and foremost, thank you HealthCentral, for hosting the afterparty. I admit, though, that this is the 1^st time I’ve left a great cocktail party to go blog.

Overall Impression: Very well done and informative.  Presentations were thoughtful and most included data.  Too many PR agencies battling to promote their digital agencies and have the sexiest graphic explaining the extent of pharmaceutical responsibility. Companies with thinly veiled “please don’t kill my business model” presentations advocating to preserve sponsored links. Consistent results from research on patient and physicians Internet usage was reassuring.  Commonsense consensus across presentations on regulated entity accountability for content in proportion to the extent of their control.

Best Presentation: WEGO Health

Just when I had given up on  hearing the patient’s viewpoint, WEGO Health gave us the actual words of health activists (top 10% of engaged patients who create and interact with content and fellow patients across multiple platforms).  WeGO Health activists welcome pharmaceutical company participation in social media (as do I) IF companies bring value to the table.  90% think that companiesalso have a responsibility to correct misinformation about their branded products and yet realize that it is impossible to monitor all mentions on the Internet. Regulation of the pharmaceutical and device industries should not come at the cost of participation.  The full survey can be requested at http://www.wegohealth.com/socialmediasurvey.

Best Presentation Title: Envision Solutions “Health Searchers: Blind, Irritated, & Impatient”

Scariest Presentation: VuMedi

VuMedi creates communities for the 80-85% of surgeons (he used orthopods as an example) who perform the majority of surgery types only once or twice a year a way to learn the surgery the night before the scheduled procedure or exchange comments with higher volume proceduralists.

Worst Presentation: National Research Center for Women & Families

I have a great deal of respect for this organization and so I was so disappointed by their call for the FDA to issue more regulation and more severe penalties for pharmaceutical interactions on the Internet, completely out of step with the flexibility that almost all others outlined.  The presentation also reflected a great paranoia about potentially ghostwritten content (“I don’t know who’s paying for this content” —  take 10 seconds to google and look for the company name in the corner or do 1-click.) and Wikipedia. (Really, is the FDA supposed to do something about Wikipedia?)

Most Intriguing Solution: FDA seal of approval symbol for credible sites (PhRMA and others)

Interesting Factoids:

• 83% of Internet users searched for health information (Pew Internet survey)
• 13% of hospitals use social media (Acsys Interactive)
• 78% of condition sufferers go online (comScore)
• 36% of consumers who view online product information then go seek a physician (Google)
• 27% of consumers who view online product information change their behavior (Google)
• 4.6 Billion (with a B) searches on health keywords in the US in last 3 months of 2007 ( Google)

Key Takeaways:

1. Social media should be important to FDA and Pharma because it is important to patients and physicians.
2. Patients welcome pharma and device participation in social media if they lead with value not branded message.  Patients first!
3. Regulated entities should be held accountable for content in proportion to their control whether on their own  or 3^rd party sites but their responsibility for independent content and content changed by independent entities should be limited or none.
4. Full prescribing information with risk and benefit should not be more than 1 click away from branded product related commentary on pharma-controlled or collaborative sites.  Amount and proximity of fair balance information should reflect audience and potential space limitations of medium.

Full information about the FDA meeting can be found at http://bit.ly/29eHnf