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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!

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Weathering the Storm with Chronic Conditions

February 10th, 2010

As the 4th 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?

  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

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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 1st.

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The Real Death Panel: USPSTF and Breast Cancer

November 17th, 2009

In today’s Annals of Internal Medicine and splashed across the front pages of many major newspapers are the shocking new recommendations of the U.S. Preventive Services Task Force (USPSTF) that:

  1. Women should not begin routine mammograms until age 50 (instead of the current age 40)
  2. Women should not be taught to do monthly self-examinations
  3. Physician/clinical breast exams have insufficient evidence of benefit.

Was there a new study that changed their minds? No, just some computer modeling.

Did this modeling show that lives would be saved?  No, annual mammography for all women beginning at age 40 reduced the death rate from breast cancer by 15%, yes, fifteen percent.  According the American Cancer Society in 2009, among women younger than 45 – 6, 460 were diagnosed with in situ ( confined to the breast) cancer; 18,640 had invasive breast cancer; and 2,820 died.  These women and their families don’t matter? Apparently mammography saving lives is not a persuasive argument for these folks.

The justification of the USPSTF and its supporters – false positive readings of earlier screening may cause anxiety and 33/1000 women may have an unnecessary biopsy.

Now I don’t take this lightly.  I was diagnosed with high grades of dysplasia (cellular changes on their way to becoming cancerous) and have had multiple biopsies of various body parts in my 20s and the “anxiety” of a false positive (the false parts later leads to relief) does not even come close to the joy of being alive.

What is the U.S. Preventative Services Task Force for if they’re not for prevention?  They’ve recently torpedoed prostate cancer and Peripheral Arterial Disease (PAD) screening.  Economists may say that they are for evidence-based public health policy, I see rationed care and justification for reduced insurance reimbursement.  Talk about a death panel.

Resources:

Annals of Internal Medicine – USPSTF recommendations   on breast cancer screening http://www.annals.org/content/151/10/716.full

American Cancer Society response to USPSTF recommendation http://www.cancer.org/docroot/MED/content/MED_2_1x_American_Cancer_Society_Responds_to_Changes_to_USPSTF_Mammography_Guidelines.asp

USPSTF Information including Membership http://www.ahrq.gov/clinic/uspstfab.htm

National Breast Cancer Coalition supports new recommendations http://www.stopbreastcancer.org/

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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.

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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 1st 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 3rd 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

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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

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A Patient’s Quest for Quality in Healthcare

October 5th, 2009

As part of an otherwise excellent presentation on the key drivers of rising healthcare costs, two slides purported to demonstrate that overbuilding of healthcare facilities was the result of inappropriate emphasis by patients on facilities’ cleanliness and convenience as measurements of quality.  The presenter’s point was that patients could not be trusted to assess healthcare quality since they chose such obviously silly metrics instead of judging and selecting hospitals or physician practices on the basis of cost, outcomes, or adherence to guidelines.

I had several thoughts in reaction, a few of which I can print – (1) With upwards of 2 million nosocomial (my favorite word) infections a year causing more that 100,000 deaths and complications, cleanliness is nothing to sneeze at; (2) in a past life I was taken to task by the HRSA administrator for making the point that there might be value in having the choice of  a transplant center close enough that families could support their loved one through a traumatic life event so I won’t comment here on the issue of proximity; but most importantly (3) patients judge what they can see.  If we make quality metrics such as cost, outcomes, and adherence to guidelines more accessible to patients then they will include those metrics in their decisionmaking.

And so I embarked on my own journey to see how readily available patient-friendly quality data is for patients.  First I looked for information on hospital information.  Hospital Compare http://www.hospitalcompare.hhs.gov/, an HHS website powered by Medicare data, allowed me to compare hospitals within a radius of my chosen zipcode on process of care (basically guidelines/evidence) adherence, outcomes like death, and patient satisfaction elements like physician communication or nurse responsiveness.  Interestingly, among the subset of local hospitals I chose, quality was similar but median Medicare payment ranged from a two to four fold difference.  Still a limited set of procedures and conditions are included, I have no idea how patients with my demographics and characteristics fared, and the Medicare cost data may bear little relation to what I might actually pay under my insurance let alone self-pay.

Physician information is available in a variety of formats for various fees, typically $9.95 to $24.95 on websites such as HealthGrades http://www.healthgrades.com and Physician Reports http://www.physicianreports.com or compiled in the Consumer’s Checkbook Guide to Top Doctors or Castle Connolly’s various city-specific  Top Doctors.  Plugging in one of my specialist’s name I was able to get disciplinary actions (luckily none), board certifications, years of education, hospital affiliations and even ease of scheduling, however I had no idea from the information provided if my doctor was any good.

Lastly my health insurer has a premium designation that awards stars for quality and cost-efficiency.  I could not find the basis for those designations and having been ill-served by one of their “centers of excellence” in a particular specialty, you can color me skeptical.

My takeaway is that even for a highly motivated, insured, internet savvy patient, with fair familiarity with health care and health care jargon, comprehensive actionable physician and facility information is limited, hard to find or non-existent.

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September 12th, 2009

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A Patient’s Principles for Healthcare Reform

September 7th, 2009

If we truly wanted to create a patient-centric healthcare system – not insurer-centric, employer-centric, or even physician-centric – I believe that we need to do the following:
1. Redefine healthcare to include a holistic, 360 degree view of health from wellness, to prevention, diagnosis, treatment, rehabilitation, and hopefully back to wellness.
2. Align a payment system, not necessarily, but possibly an insurance system, to support those elements along this 360 degree paradigm that provide actual value, i.e. improve patient outcomes.
3. Provide transparency in pricing. Costs, potential cost-savings, and how those costs were calculated should all be included. Cost and price can be two different things. The government declaring that they need to cut physician payments in Medicare, for example, does not lower the costs of physicians delivering care.
4. Widely disseminate consumer education and patient decision support tools to facilitate informed evaluation of health and medical options.
5. Universal mandatory participation in some type of health insurance or financing mechanism coupled with guaranteed issue. The system should put individual coverage on an even playing field with employer coverage and drop barriers to multi-state or other groupings.
I believe in a system that is consumer-directed, where patients are able to accurately estimate the amount of financial risk they can tolerate for health expenses and can buy reasonably priced coverage for services above that personal level of risk. I believe that patients should have their choice of physicians and be supported and empowered to engage in appropriate self-management by members of their healthcare team. I believe that the most important decisions we make in healthcare involve what we eat, how much we move, choosing not to smoke, and other lifestyle choices, but when our genes, fate, or attempt to stay forever young fail us, the availability of quality medical care that does not bankrupt us in the best interest of all.

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