DCPatient

An Impatient Patient's Perspective on Health Care Today blogged live from Washington DC

Posts Tagged ‘patient’

Are Patients the New Black People?

February 19th, 2010

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!

1 comment »

Posted in General

Tags: patient patient advocate

Weathering the Storm with Chronic Conditions

February 10th, 2010

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 4×4s 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?

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.
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.
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

Comments Off »

Posted in General

Tags: dialysis National Kidney Foundation patient

What If We Had to Start From Scratch?

January 25th, 2010

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.

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.
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.
Meaningful coverage – accept the insurance company proffer to eliminate pre-existing conditions, guarantee issue, remove lifetime caps, etc.
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.

Comments Off »

Posted in Healthcare Reform

Tags: healthcare patient quality reform Scott Brown

The Fundamentals of Pharma/Patient Group Interactions

January 8th, 2010

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.

1 comment »

Posted in General

Tags: patient pharmaceutical social media

Bringing Calm to the Chaos of Your Doctor’s Visits

December 8th, 2009

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

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.
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.
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.

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!

Comments Off »

Posted in Doctor-Patient Interactions

Tags: doctor medication patient

A Patient’s Perspective on Day 2 of the FDA Public Hearing on Social Media

November 13th, 2009

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.

6 comments »

Posted in Doctor-Patient Interactions, General

Tags: fda medication patient pharmaceutical physician social media

A Patient’s Perspective on Day 1 of the FDA Public Hearing on Social Media

November 12th, 2009

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:

Social media should be important to FDA and Pharma because it is important to patients and physicians.
Patients welcome pharma and device participation in social media if they lead with value not branded message. Patients first!
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.
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

Comments Off »

Posted in General

Tags: fda patient pharmaceutical social media

Franken Bill Presupposes Doctors and Patients are Stupid

October 23rd, 2009

@PharmaGuy and I exchanged several tweets yesterday afternoon debating the merits of the Senate bill introduced by the junior Senator from Minnesota, Al Franken. The title of the bill is the “Protecting Americans from Drug Marketing Act” the purpose of which is to deny the tax deduction for advertising and promotional expenses for prescription pharmaceuticals.

Reasons I’ve heard over the years why pharma direct to consumer advertising is bad:

Misleads patients into thinking that you can have intimate relations while soaking in separate bath tubs on the beach (sorry, that’s just my confusion)
Causes patients to spontaneously come up with symptoms and trick them into believing that there is something their doctors can do about them to make their lives better (no, still me)

You know you scoffed at restless leg syndrome until they found the gene

Ok, please leave some comments telling me why Americans are too stupid to risk being subjected to advertising on pharmaceutical products as opposed to any others and why physicians are too tired from explaining that antibiotics can’t cure a cold to resist writing a prescription for anything and everything a patient mentions during their 15 minute visit. Here’s a start from Public Citizen http://www.citizen.org/publications/release.cfm?ID=7402

But the bill goes on to define advertising and promoting as “includ[ing] direct to consumer advertising in any media and any activity [emphasis mine] designed to promote the use of a prescription pharmaceutical directed to providers or others who may make decisions about the use of prescription pharmaceuticals (including the provision of product samples, free trials, and starter kits).”

So not only are patients not to be trusted, but physicians, nurse practitioners, pharmacists, and a host of healthcare professionals are also apparently unable to discern risks and benefits and decode pharmaceutical advertising and promotional activities. Things that may arguably fall under this definition:

Sales rep and medical science liaison salaries (isn’t everything they do for the purpose of directly or indirectly promoting the use of the products – so longto those tens of thousands of jobs

(For that matter so long to all the positions in PR and advertising that support pharma — Obama didn’t REALLY want jobs created this year anyways)

Medication adherence programs (they promote the use of pharmaceutical products)
Patient Assistance hotlines and programs like TogetherRxAccess (ok, maybe you can still have them, you just can’t advertise and let patients know that they are there)
Patient or physician education programs raising awareness of a disease (learning about diabetes may encourage people to actually take the treatments)

Now negation of the tax deduction is not the same as outlawing the practice, but it is close when you consider the pressure for profits from Wall Street and the realities of running a business. Please leave this type of regulation to FDA which has the expertise, if funds are properly appropriated, to craft reasonable remedies in the Risk Communication Committee and DDMAC.

Comments Off »

Posted in Doctor-Patient Interactions, Healthcare Reform

Tags: adherence healthcare medication patient physician

What Should A Patient Sound Like?

October 20th, 2009

I started the DCPatient blog 6 weeks ago, unsure of the reaction I would receive for my opinions on what patients would like to see from the healthcare system. Overwhelmingly, the reactions have been very positive and thoughtful with dozens of comments on this blog, LinkedIn, and Twitter.

One repeated criticism has been that I am “too educated” or write at “too high a level for the average patient” or that my postings were “not what they expected from a patient’s blog”. Interesting. What should a patient sound like? Write like? Blog about? My Harvard degree did not spare me from becoming ill. My Georgetown law degree barely enables me to navigate insurance coverage.

While I understand the point that for most Americans issues of literacy, health literacy, numeracy, language and culture, time challenges, and family obligations serve as real barriers for understanding, engaging, and optimally accessing the healthcare system, my education does not make me any less of a patient than the next person in the waiting room. What it does do, I feel, is obligate me to pick up the mantle for other patients and push, prod, and advocate for changes in healthcare that serve us all. Regina Hertzlinger, Phd, of Harvard Business School, would call me a marginal consumer.

Last week something remarkable happened, I emerged from the desert to find that there were many others like me. ePatientDave kindly introduced me to the Society for Participatory Medicine and a host of professional patient provocateurs just as educated, annoyed, and activated as I hope to be. Please check them out.

Trisha Torrey, Every Patient’s Advocate

Survive the Journey

Six Until Me

EPatient Connections 2009 Conference

1 comment »

Posted in Doctor-Patient Interactions, General

Tags: Consumer consumer-directed healthcare patient

From Health Insurance to Health Plan – A Patient’s View

October 13th, 2009

It has been interesting for me to watch the transformation of the term health insurer to health plan. Having been insured since in my mother’s womb, I have never been notified that any of my health insurance companies has a plan for my health. For a health insurance company to be termed a PLAN, in my mind, I would like to see:

1. Prompting and reimbursing me and my physicians to establish my baseline health metrics and specific health goal(s)

Enrolling in a plan as a new subscriber, a milestone birthday, or just the turn of the calendar could provide the incentive to create a personal plan for my health. Am I hypertensive? Am I diabetic? Do I want to lose weight this year, train for a marathon or have a baby?

2. Providing quality and cost assessment information so that I could select the best physicians for my circumstances

See post A Patient’s Quest for Quality in Healthcare.

3. Facilitating information exchange between my team of physicians

I have a primary care physician, gastroenterologist, transplant hepatologist, gynecologist, reproductive endocrinologist, dermatologist, and from time to time an oncologist, across 4 different practices and medical centers. I would pay anything to have them talk to each other. Even to have them reliably and regularly share data and view one unified chart and come to a common assessment and plan for my treatment would relieve me of the huge burden of coordination, and no doubt reduce cost, waste, and error.

4. Suggesting, creating networks and reimbursing or providing discounts to complementary services to augment my health such as acupuncture, nutrition counseling, gym membership

90% of what I do to maintain and improve my health happens outside of a doctor’s office. Health insurer’s buying power and breadth can support my access and use of complementary wellness services to optimize medical treatments and prevent others.

5. Proactively sending me lab results, medication refill and appointment scheduling reminders

Health insurers could add real value by leveraging technology to facilitate my adherence to my treatment plan in the midst of a busy life.

6. Helping me track my progress against an integrated care plan that I create with my team of physicians and complementary providers

Whether building on success or highlighting areas for early intervention, an integrated health plan dashboard with alerts could encourage my focus and active pursuit of health.

Under increased scrutiny in this era of healthcare reform, health insurance companies need to decide and describe how they add value to the healthcare system. Their access to aggregate data on their members can fuel the integration of care across physicians, hospitals, and pharmacies for patients and support empowered consumer behavior.