Monthly Archives: August 2010

Some health and healthcare facts…

Posted on August 26, 2010 | 3 Comments

  • Heart disease is the number one cause of death for both men and women in the United States. Cancer and stroke round out the top three.
  • Heart disease accounts for 40% of all U.S. deaths, more than all forms of cancer combined.
  • Negative emotions and depression are risk factors for heart attack and stroke. Conversely, happier people are less likely to develop heart disease.
  • Researchers found that a woman’s resting pulse rate was a good indicator of her risk of heart attack. Women with high heart rates, at or above 76 beats per minute, were more likely to suffer a heart attack than women with lower resting pulse rates (62 beats per minute or less).
  • People with diabetes, older adults, and women may not have the classic symptom of chest pain during a heart attack. They are more likely to suffer from shortness of breath, nausea, back pain, and/or jaw pain.
  • More than 79,400,000 Americans have one or more forms of heart disease.
  • Research suggests that 25% of heart attacks go unrecognized and are discovered only later when a routine ECG is performed.
  • One in 2.6 female deaths in the U.S. is from heart disease, compared to one in 30 from breast cancer.

Source:Chilnick, Lawrence. 2008. Heart Disease: An Essential Guide for the Newly Diagnosed. Philadelphia, PA: Perseus Books Group.

  • Approximately 90% of people with Type 2 diabetes are obese.
  • African-Americans and Hispanics have a much higher rate of Type 2 diabetes than whites. There are 74 cases per 1,000 for African-Americans, 61 cases for Hispanics, and 36 cases for whites.
  • Some studies have indicated that individuals with diabetes are at much greater risk for developing Alzheimer’s disease and other forms of dementia than are non-diabetics, though the reasons are unknown.
  • There are approximately 86,000 lower-limb amputations on diabetics in the United States each year. Rates of amputation were higher among men than women and higher among African-Americans than whites. Experts believe nearly half of all amputations could have been prevented with appropriate examinations and education.
  • Approximately 11% of all Americans aged 65-74 have diabetes. About 20% of those over 75 years old have diabetes, and nearly half of them are unaware they have the disease.
  • According to the Centers for Disease Control and Prevention (CDC), diabetes is the sixth leading cause of death in the United States.
  • Experts report that diabetes decreases life expectancy by five to 10 years.
  • Approximately 17 million U.S. residents have been diagnosed with diabetes, which is nearly 10% of the estimated 170 million people suffering from diabetes worldwide.

Source: Adamec, Christine. 2002. The Encyclopedia of Diabetes. New York, NY: Facts on File, Inc.       Collazo-Clavell, Maria. 2001. Mayo Clinic on Managing Diabetes. New York, NY: Kensington Publishing Corp.

  • More than 20 million people in the United States suffer from depression in a given year.
  • Women are twice as likely to suffer from depression than men. Women may be at a higher risk for depression due in part to estrogen, which may alter the activity of neurotransmitters that contribute to depression.
  • At some point in their lives, about one in four Americans will experience depression.
  • Men typically experience depression differently from women and use different means to cope. For example, while women may feel hopeless, men may feel irritable. Women may crave a listening ear, while men may became socially withdrawn or become violent or abusive.
  • Approximately 80% sufferers of depression are not receiving treatment.
  • Fifty-eight percent of caregivers for an elderly relative experience symptoms of depression.
  • The total cost of depression in the Untied States are estimated to be $44 billion: $12 billion in direct costs of treatment, $8 billion in premature death, and $24 billion in absenteeism and reduced productivity at work. These do not include out-of-pocket family expenses, costs of minor and untreated depression, excessive hospitalization, general medical services, and diagnostic tests.

Source: Lam, Raymond W. and Hiram Wok. 2008. Depression. New York, NY: Oxford University Press.

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Drug samples: Great for patients or a marketing gimmick ?

Posted on August 22, 2010 | 9 Comments

There has been a lot of debate online about prescription drug samples that are given to patients by physicians.  Some within the industry see samples as a way to “get patients hooked” as they say.  They argue that samples lead to more expensive brand name drugs recommendations and thus cost patients more than generics.  I believe that prescription drug samples provide both the patient and the HCP with a way to treat patients via free medications and in the end isn’t that the objective ?

I have said, in the past, that patients are becoming consumers of healthcare.  What do I mean by this ?  Let’s say a patient goes into a physician and is given a sample of “Crestor” to treat her high cholesterol.  After two weeks, when the sample is gone, the patient may have to make a choice.  Does she chose the Crestor at a higher price (copay)  via her insurance plan or does she take the generic statin at a lower copay price ?   Some patients of course might ask their physician which they believe is better for them but others, because of the flat economy, may decide to go the generic route.  Although the patient tried the sample their decision, I believe, more and more is going to be driven by economics and the key question “what’s the difference between the two?”

Then there is the use of discount coupons which give discounts on frozen meals, toothpaste, breakfast cereals and household cleaners.

And increasingly, consumers are turning to coupons for their prescription medications, too.

Web-savvy consumers, like Stephanie Nelson, founder ofcouponmom.com, seek coupons by visiting the drug manufacturer’s Web site and print them from home computers to lower prescription costs. Nelson, an Atlanta, Georgia, resident, found three $10 coupons for her children’s Advair (an asthma medication) that applied to her insurance co-pay and a $30 discount for another medication

Prescription coupons may result in initial savings, but critics say they lure consumers into buying expensive brand-name drugs.
 Advocates, however, see benefit to consumers in the current tough economy.  ”It’s not a permanent solution, but it’s a solution that helps a lot of people,” said Dr. Rich Sagall, president of NeedyMeds.org, a nonprofit that helps people who cannot afford medicine or health care costs.

It’s unclear from marketing research how many prescription drug coupons are redeemed. Prescription drugs are lumped into the health and beauty category, which includes personal care products and over-the-counter drugs. That makes it difficult to pinpoint how many medication coupons have been redeemed, according to NCH Marketing Services Inc., part of the Valassis Co., which manages coupon processing and promotion information. However, prescription drugs were not in the top 10 growth or top 20 categories of coupon distribution, said Charles Brown, vice president of marketing.

Another tactic being used by drug companies are loyalty or guarantee programs.  While at Lilly our team developed the Cialis Promise program which gave a free sample to patients with the promise if they didn’t like it they would be given their money back.  That program was so successful that it has not be extended to Cymbalta as the Cymbalta Promise Program.

The debate around free samples is obviously going to continue for a long time.  

However what is changing in the mix is the patients sensitivity to price
.  By raising copays insurers are meeting their objective to drive patients to generics or at least to ask about them.  Price is becoming a bigger part of the equation for a lot of people today and that is not going to change.

There are ways to find discounts for prescription drugs that require digging on the Web, said Mehdikarimi, who runs the Shopping Queen Web site, which dispenses cost-cutting advice. She compares drug prices from different retailers and checks to see whether she can find coupons from retailers such as CVS, Walgreens, Costco, Target or Wal-Mart.

When a medication for her daughter’s earache cost $150, she told the physician it was too expensive. The doctor wrote another prescription for a generic drug that cost $10, and it worked just fine, she said.  One has to wonder how many patients are doing the same thing.

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Research findings from health care professionals

Posted on August 13, 2010 | 8 Comments
In addition to doing some research with eHealth consumers I also led some research with health care professionals (PCP’s, Nurses).  Here are some of the top-line findings from that research.

  • Most feel that DTC advertising is good for patient health concerns and informs patients.
  • They feel that there is too much bad health information on the Internet and feel that some of it should be regulated when the information could be considered dangerous to patients.
  • Pharma drug websites are a good resource for patients but some are concerned that diagnostic tools could be taken out of context.  They would like it made more clear that only a healthcare professional can make an accurate diagnosis and suggest treatment options.
  • Although physicians are spending more time on the Internet often it is not by choice.  They are having a hard time keeping on top of all the new health information and sites online.
  • Social media scares some physicians because they are not sure how to use it or what they should use it for.  However at one research group in Dallas a physician shared with colleagues how he is using social media to market his practice.  They were very interested in hearing what he had to say.
  • It is getting harder to get patients in for follow-up visits and it is especially getting hard to get men in at all even when they having problems.
  • Most are still seeing drug reps but they all said that it’s getting more difficult to find time to meet with them.
  • They are interested in eDetailing but prefer not to speak to a live person so they can proceed at their own pace.  Their advice to drug marketers is to keep the details under 5 minutes and allow them to download relevant charts and clinical trial information.
  • Integration of the Internet with patients is coming and most see it as a huge issue because they are not sure how, where, or how.  When we showed them a concept of a solution that could possibly tie in patient records, CRM, consumers health information it was a winner but they also want it tied into insurers to cut down on paperwork.
  • “Do you trust the drug industry when it comes to reporting accurate information on prescription drugs ?”  The answer from most was yes but they if patients have issues on certain medications they would check with colleagues to determine if anyone is having similar problems.
  • What is the biggest challenge you face today ?  Most said cost controls that have been put in place by the government are a key concern.  ”I have to try and see more patients now to make up for the cuts that I am receiving from Medicare”. The other big issue that has them concerned is that fewer patients are coming in to see them at the start of health problems. One physician told the story of a man who waited for year before he came in because of problems urinating.  It turned out that the patient has prostate cancer and needed immediate aggressive treatment. “If it were caught earlier we could have used less invasive treatment options and the diagnosis would have been a lot better”.
  • Physicians want a system where they can be notified to changes in drug labeling even if the product does not have a REMS.  They also said “don’t just send me the new label tell me what the changes are”.

What was really interesting in talking with physicians was that they wanted to know who this research was for.  When we told them for a new biotech start-up they wanted to know a lot more.   We had a frank discussion to tell them that the company, which we could not disclose, was not going to add sales people but rather hire people with medical degrees to act as people to channel information and establish relationships with physicians in their territory including the use of an Internet site.  They thought that idea was great and asked “why the hell aren’t more companies doing this ?”

Please note that the physicians received a fee for attending the research which lasted 2 hours.  They also had the option to donate the fee to a charity of there choice which many did.

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Some stats on eHealth consumers and wired physicians

Posted on August 12, 2010 | 5 Comments

More and more people are using the Internet for health while fewer patients are going to see their doctors and picking up prescription medications.  Physicians are also becoming more reliant on smartphones and want to use social media but for now their main concern is sharing information with each other.

1. Less people are going to their physicians -Insured Americans are using fewer medical services, raising questions about whether patients are consuming less health care as they pick up a greater share of the costs.    ”People just aren’t using health-care like they have,” said Wayne DeVeydt, WellPoint Inc.’s chief financial officer. “Utilization is lower than we expected, and it’s unusual.”

2. Compliance is a problem that is costing America’s healthcare system a lot of money - One-third to one-half of all patients do not take medication as prescribed, and up to one-quarter never fill prescriptions at all, experts say. Such lapses fuel more than $100 billion dollars in health costs annually because those patients often get sicker.

3. Physicians want to get more involved with social media but they don’t have the time and they are worried about privacy issues of connecting with patients via social media.

94% of physicians are using smartphones to communicate, manage personal and business workflows, and access medical information.

  • Seventy-eight percent of physicians are experiencing difficulties accessing and communicating with colleagues in a timely manner. Physicians are busy mobile professionals who are constantly on the go and are not always available when they are needed.
  • Physicians report they are overwhelmed by the daily volume of communications received from colleagues, care team members, and patients. They lack automated tools to manage voice mail, pager messages, SMS messages, and electronic mail. They are forced to continually check separate data silos and manually filter and prioritize communications based upon sender, subject and priority. Critical communications easily fall through the cracks

4. The number of people looking for health information on the Internet is increasing every year

  • While the percentage of adults who go online (79%) has not changed significantly for several years, the proportion of those who are online and have ever used the Internet to look for health information has increased to 88% this year, the highest number ever.
  • Fully 81% of all eHealth consumers have looked for health information online in the last month. And 17% have gone online to look for health information ten or more times in the last month. On average, eHealth consumers do this about 6 times a month.
  • Very few eHealth consumers are dissatisfied with their ability to find what they want online. Only 9% report that they were somewhat (6%) or very (3%) unsuccessful. And only 8% believe that the information they found was unreliable.
  • Just over half (53%) of all eHealth consumers report that they have discussed information they found online with their doctors.
  • Half (51%) of all eHealth consumers say they have searched for information on the Internet based on discussions with their doctors.

So what does all this data mean ?  It means that there is one hell of an opportunity to open the doors wider on digital marketing.  The idea of simply building a website and spending money on search is not going to be sufficient anymore if DTC marketers really want to reach patients and help them consider their products in their decision making. Even without social media there are a lot of opportunities to improve digital marketing. The mix of budget should really be reviewed and more dollars should be allocated to the channel which influences decision making the most and that is the Internet.

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Final report: 11 months of research on consumer ehealth

Posted on August 11, 2010 | 7 Comments

After 11 months of both qual and quant research the final report was issued to my client almost 3 months ago and they gave me permission to share some of the top-line results with my readers.   There is nothing that I believe is eye-opening but there is a lot of confirmation that pharma marketers need to do a hell of a lot more to keep marketing relevant.

  • Although more people than ever are searching for health information the search for health information is driven primarily by triggers such as a loved one getting sick or someone who has certain symptoms and is trying to find the possible causes.
  • Caregivers spend a lot of time online looking for health information for people under their care.  They also have a lot of influence in health decision making choices.
  • Health information on the Internet is often difficult to understand.
  • Health searches usually consist of visits to several health sites which may or may not include pharma product websites.
  • Top reason for going to pharma product website:  ”I want to learn what the side effects are”.
  • More than 80% of people who visit a pharma product website are also going to visit a competitors product website.
  • Social media has a place within health searches.  People often look to validate what they know/believe about a product via social media.
  • TV ads do not drive Rx behavior for more and more consumers.  Research clearly showed that when people see an ad for Rx product they will do more research online if they are interested.
  • A lot of people will visit social media sites without leaving a comment or sharing content with others.
  • We asked ehealth seekers “would you follow a pharma brand online via Facebook or Twitter” and a majority 82% said “no”.  When asked why “I don’t know who I am talking to”.  However for serious conditions like cancer we found that some people might be willing to engage a pharma company online if they provided information in new drugs in development and links to enroll in clinical trials.
  • Fist place a majority of health searches take place: Google.
  • When asked “how does the health information you find effect your relationship with your doctor” most answered that they can ask their physician about information they read and thus have a better idea of what to expect.
  • Surprising finding:  A lot of people are not picking up their Rx’s without first learning about the drug and its side effects.  If they feel the side effects are too risky they will not take the drug.  Second reason: My co-pay has increased substantially.
  • We then followed up with this: Since the FDA approves prescription drugs they are safe and effective and then asked them to say agree and disagree. 68% disagreed.
  • “Does direct to consumers marketing and advertising of drugs add to the high cost of prescription drugs?”   A majority 76% said “yes”.
  • Should prescription drug marketing be more tightly regulated by the FDA ?  ”Yes, 81%.

I have a lot more here, over 70 pages of top-line findings.  It was interesting because as we broke out the data by ages. Younger ehealth consumers,  Gen X & Y ,ehealth had less trust in big pharma, less trust in their physician and were more willing to share Rx drugs with each other.

Older consumers, Boomers, are becoming more skeptical of marketing but they still trust their physician to do what is best for them.

I’ll have more as my client gives me permission to release more.

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A lesson for pharma: How the Web empowers people to get to the truth when companies don’t embrace transparency

Posted on August 10, 2010 | 5 Comments

The Wall Street Journal does not pretend to be on the center of anything.  They are a conservative big business newspaper but I still enjoy reading their stories.  Today there was a story titled “Why I’m Not Hiring When you add it all up, it costs $74,000 to put $44,000 in Sally’s pocket and to give her $12,000 in benefits.”

The story is about the added cost of health insurance for employers;

Employing Sally costs plenty too. My company has to write checks for $74,000 so Sally can receive her nominal $59,000 in base pay. Health insurance is a big, added cost: While Sally pays nearly $2,400 for coverage, my company pays the rest—$9,561 for employee/spouse medical and dental. We also provide company-paid life and other insurance premiums amounting to $153. Altogether, company-paid benefits add $9,714 to the cost of employing Sally.

Companies have also been pressed into serving as providers of health insurance. In a saner world, health insurance would be something that individuals buy for themselves and their families, just as they do with auto insurance. Now, adding to the insanity, there is ObamaCare.

Every year, we negotiate a renewal to our health coverage. This year, our provider demanded a 28% increase in premiums—for a lesser plan. This is in part a tax increase that the federal government has co-opted insurance providers to collect. We had never faced an increase anywhere near this large; in each of the last two years, the increase was under 10%.

Mr. Fleischer is president of Bogen Communications Inc. in Ramsey, N.J.. Now because of the power of the Internet we see this response from a Wall Street Journal reader;

Did anyone go on this guy’s web site? He has posted his financials. Take a look at them and tell me his problems are due to a couple thousand dollar per employee increase in employment cost.

His problems are elsewhere. For some inexplicable reason Mr. Fleisher allowed his expenses to increase by $15 million dollars in the face of a $ 10 million decrease in revenues. But he’s worried about what appears to be a$165 thousand increase in insurance costs and some administrative requirements that are easily handled at a clerical level and by very inexpensive automated payroll services. IIn short he’s got a problem that’s 150 times bigger than the insurance problem he is focused on.

He is oblivious to the fact the $3 million in dividends he paid last year might have been better used to finance future growth, or for improvements that might improve efficiency. He is oblivious to the fact that the $9 million he borrowed to finance his miscalculations in expense management will impede his ability o grow in the future. No, for Mr. Fleisher it’s all about government interference. His politics may make him feel better but they’re not going to help him dig himself out of the hole he’s n, and similar thoughts are not going to help you did your way out of yours.

This means that someone took the time to read the story, research the company and reply to the article which, at the time of writing this post, had over 700 responses. This is the power of the Internet.  The way for consumers to get at the truth and not believe media stories.  This is also the reason that pharma is having so many problems.

According to a story in Newsweek “Results from fully one third of the clinical trials of five classes of drugs never see the light of day, finds an analysis published in Annals of Internal Medicine. The drugs were anticholesteremics, antidepressants, antipsychotics, proton-pump inhibitors (which reduce gastric acid), and vasodilators (which relax blood-vessel walls in order to reduce blood pressure).

This story and the story in the WSJ are excellent examples of why transparency is NOT an option anymore.   Like Mark Twain said “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so”

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The cost of dying

Posted on August 9, 2010 | 6 Comments

Last year, Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients’ lives.  And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.This statistic is from a 60 Minutes story on “The Cost of Dying” and is one reason our healthcare system is in trouble.

Modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily.  ”The way we set up the system right now, primary care physicians don’t have time to spend an hour with you, see how you respond, if they wanted to adjust your medication”. “So, the easiest thing for everybody up the stream is to admit you to the hospital.

I think 30 percent of hospital stays in the United States are probably unnecessary given what our research looks like.

And once someone is admitted to the hospital, Fisher says, they’re likely to be seen by a dozen or more specialists who will conduct all kinds of tests, whether they’re absolutely essential or not.   

“In medicine we have turned the laws of supply and demand upside down,
” Dr Elliot Fisher said. “Supply drives its own demand. If you’re running a hospital, you have to keep that hospital full of paying patients. In order to, you know, to meet your payroll. In order to pay off your bonds.

When it comes to expensive, hi-tech treatments with some potential to extend life, there are few restrictions.  By law, Medicare cannot reject any treatment based upon cost.

It will pay $55,000 for patients with advanced breast cancer to receive the chemotherapy drug Avastin, even though it extends life only an average of a month and a half;
 it will pay $40,000 for a 93-year-old man with terminal cancer to get a surgically implanted defibrillator if he happens to have heart problems too.

“The real problem is that many of the patients that are being treated aggressively, if you ask them, they would prefer less aggressive care. They would prefer to be cared for at home. They’d prefer to go to hospice. If they were given a choice. But we don’t adequately give them a choice,” Fisher said.

Should the FDA approve drugs that extend life a few months at a really high cost to the government ?  That is an explosive issue to tackle.  Most of us want to die with dignity and peacefully and research that I conducted with cancer patients last year indicated that a lot of them do not want to go through extensive treatments that have horrible side effects if there is no hope of a better quality of life.  Eventually we are going to have to decide if it’s better to keep people alive, connected to machines at a huge cost, with no hope of recovery or to let move onto as nature had intended.  Sometimes I wonder, do we keep people alive and in misery for ourselves or them ?

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At least 70 percent of health care spending is related to lifestyle

Posted on August 5, 2010 | 10 Comments

After millions of years of evolution, the body shape of Americans changed dramatically in just two decades. Back in 1991, only four U.S. states reported obesity rates exceeding 15 percent. By 2002, all 50 states had passed that milestone, making us the heaviest developed nation on earth. Then it got worse – today, more than 20 percent of the citizens in every state except Colorado are obese. In some states, it’s much worse. Nationally, two of every five Americans are obese, compared to two of every 28 French citizens and fewer than two of every hundred Japanese.

If overweight Americans collectively made minor behavior adjustments and returned to what they weighed in 1991, they would save the country more than $1 trillion a year
And it’s not just paunchy baby boomers sending treatment costs through the roof. Doctors now frequently find “adult” diabetes and other lifestyle diseases in our increasingly obese children. That’s why any program to reverse the obesity trend should start in our schools. Sadly, only 29 percent of U.S. high-school students participate in what used to be mandatory physical education classes. About the same percentage watch television four or more hours a day.

Congress can’t mandate that we lose weight. And local laws limiting or disclosing restaurant food ingredients seem ineffective.

But several forward-thinking businesses have had success with employee wellness programs that typically offer reduced major-medical insurance premiums as a reward for losing weight, lowering cholesterol, optimizing blood pressure or quitting smoking
Johnson & Johnson offers employees a wide array of services including fitness centers, online tools and classes. Safeway’s program has kept costs flat for five years while reducing obesity and other signs of employee morbidity. These are effective ways to limit rising health care costs. We have a choice: We can pay now through wellness programs or we can pay later – and pay much more – by treating chronic diseases.

Source: The Milken Institute Review, 2010, Number one

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The report estimates the medical costs of obesity to be as high as $147 billion a year

Posted on August 4, 2010 | 7 Comments

Is there any doubt that our healthcare system is in trouble ?  Is there any doubt that the reason our healthcare system is in trouble is in large part because Americans eat too much bad food and are not doing enough to maintain a healthy lifestyle ?

The hard reality is that we can’t afford to pay for the cost of obesity without making deep cuts across the board, deep cuts that are going to hurt a lot of towns, villages, cites and their citizens.   It’s time to take the war on obesity to the mainstream and fight it as hard as we fought smoking.  It’s going to require an alliance of the FDA, big pharma, AMA, food marketers as well as restaurant chains but we have run out of options.

The FDA needs to do more to address basic consumer education when it comes to disease state awareness.  They need to focus more on prevention and enlist the help of health care professionals and insurers to set up a reward system for people who proactively manage their health by choosing better lifestyle options.   An insurer, for example, could offer lower premiums to someone who lost weight, lowered their blood pressure or cholesterol.  Companies need to find enticements to get employees to join health clubs or they can work with the company that manages their cafeteria to offer a wider choice or healthy food.

What about big pharma ?   I believe they need to do more to work with physicians to help people better manager their health.   Chances are, for example, that if you have high cholesterol you will be prescribed a statin when possibly the first course of treatment should be an attempt to modify the patients diet and lifestyle through education and awareness of the dangers of high cholesterol.

It’s not going to be easy.  Today people are becoming obese both because we are an aging population and because they tend to use food as a reward for dealing with the daily stresses of life.  I believe that we can assemble some of the best and brightest advertising and marketing people to meet and form a coalition to get funding to fight this enormous problem and to hit it head on with reality of what obesity does to people and this country.  We just can’t stand by and do nothing while we eat another cheeseburger.

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Type 1 Diabetics reach out to each other for support and help

Posted on August 2, 2010 | 9 Comments

Last summer we did some research with both caregivers and people with Type 1 diabetes. The objective, for a biotech company, was to learn where Type 1 diabetics go for help and support and listen to what they want in online/offline information.   While the research is almost a year old it is still relevant today and after participating in an online Twitter discussion last night I just wanted to share some of the top level findings.

1. Type 1 diabetics do not like being lumped in with Type 2 diabetics. Being obese or overweight puts you at significant risk for developing type 2 diabetes. Four out of five people with type 2 diabetes are overweight or obese.  However Type 1 diabetics is an autoimmune disease that can strike healthy people and the best guesses have center on some combination of a genetic predisposition to diabetes that is triggered by an unknown environmental factor.  People with Type 1 want others to know the difference and it can be a big issue for them.

2. When diagnosed with Type 1 it can often lead to depression – I remember hearing the story of young woman in her 20′s who lived a healthy lifestyle and was just diagnosed with Type 1.  ”I was devastated ” she said “I am a vegan, only eat organic, run 5-6 miles a day and now I learn that I have lost some control of my life?”.   She reached out to others via social media and quickly received support and encouragement to “live live on my terms and take charge of my health”.

3.  Diabetics, especially Type 1, are very active online via social media. There are more pages and community websites devoted to diabetes than any other health condition from our analysis.  Patients spend a lot of time on these sites and their are opps to learn from each other. Top topics patients want: how to live with Type 1,  insulin pumps vs. alternatives, new potential treatments, plus they want to know about new technology in developing pain free syringes.

4. Caregivers want tools to give them peace of mind. “I want my child’s teacher to know the symptoms of glucose imbalances.  I want to know if anyone at the school has had any training when it comes to children with Type 1 diabetes”.   Tools, such as printable “signs to look for” that can be handed to teachers tested really well.  We also asked about possible mobile apps to alert caregivers to the glucose levels of someone under their care and although it was well received they want assurances that the technology is reliable.

As part of the exercise in the research we had the focus groups design their own home page for a website that would be targeted just for them.  

It was interesting to see them switch from patients/consumers to marketers
 and say things like “I think people would want to see..”  They want a home page that they can come to that has updated information on it so they don’t have to go deep in the site to see if anything new is there. They want the option of RSS feeds and eMail alerts but only if the information is valuable and finally they want images of real people who have diabetes doing real life things including intimacy.  One young woman said, for example, “when I have sex I use an ace bandage to cover my pump”.  After she made this comment two other women in the group immediately gave her ideas on how be intimate while on the pump.

These people are eager to share and learn from each other and to them social media has been a great tool to form a sense of community.

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