Cancer Survivor's 10 Tips for the Healthcare System
Nothing is a waste of time if you use the experience wisely - Auguste Rodin
Pharma & Healthcare
Much has changed over the last 20 years for people with cancer. Pat Elliott describes how far things have come for patients while also shedding light on how more improvements are still necessary. With Pat’s permission, I am excerpting an email she shared with Brad Tritle who is one of my co-editors on the upcoming HIMSS book “Engage! Transforming Health Care Through Digital Patient Engagement”. The following is a brief profile of Pat:
Professional background: Journalism, Marketing and PR Management for hospital systems, a global enterprise level EMR firm and global tech firms including Intel and HP.
Personal: Two time cancer survivor. Breast cancer as a young adult, in full remission. Now living with a rare, chronic form of leukemia (CML) diagnosed three years ago.
In her email, she outlined the dramatic improvements she’s experienced with her recent experience. It’s striking that virtually all of the improvements have come from sources outside the healthcare systems. Astute healthcare leaders recognize that the next wave of improvements can and should come from the healthcare providers themselves. Those leaders will gain a major advantage if they adapt.Here’s how Pat describes the differences (most good, a few not so great)…
As I was thinking about my own experiences, and the way healthcare professionals treat patients, I realized that most seem to think we are still in the model that existed with my first cancer diagnosis – a time when patients did what they were told and didn’t have other resources for information or support. E-Patient Dave calls that the car wash approach – you go on the conveyor belt and get shoved through, with everything happening to you as you are passively moved along. It’s a good description.
With the second cancer I have had access to information and resources, through the Internet, that enabled me to understand my cancer and treatment options, get the follow-up information needed to recover and move forward, avoid medical mistakes, feel less isolated even though what I had was very rare (many CML patients have never met another human being with CML) and, generally, all of these things supported the healing process and a return to more of a normal life. A cost analysis would likely also show this has a cost savings benefit for the healthcare system too.
Differences with the second diagnosis include:
Immediate ability to research the diagnosis, treatment and prognosis online from reputable sources. Current info. Books go out of date within months.
Ability to check out a computer in the hospital and do immediate follow up, real time, on the information provided, tests scheduled, etc.
Easily built a website (Caring Bridge) as a communications tool/relieved tremendous stress and burdens at a critical time
Ability to tap into a site (Lotsa Helping Hands) with online tools to schedule and set up patient support
Used a Google Group for friends to organize food support, deliveries, meals, etc.
Providers were focused mainly on clinical aspects. Most of the information needed to process the diagnosis and live with the disease/treatment came from other patients. This gap causes a distrust of the providers and makes the information from fellow patients seem more credible.
Providers – and the marketing firms after their business – act like social media is new. Patients have been online since the bulletin board days, before social media even had a name. Some patient communities have existed for decades, have highly credible leadership, and offer real world information. ACOR.
New communities spring up organically through Yahoo and Google Groups and orchestrated health website platforms.
Able to attend virtual educational programs online with world class experts in my disease, with people from around the world.
Able to go far beyond consumer media and access clinical journals thru basic tools (journals, Google Scholar) and sites that aggregate the data (Medify)
Because my leukemia is rare, and the treatment is new and cutting edge, it’s difficult to find a true expert. When I ran into issues I was able to reach world class experts, at no cost, through an online portal run by a nonprofit advocacy organization, to get expert advice on a medical opinion I got in Phoenix which seemed off track. The local specialist aggressively tried to push me into a transplant that I did not need. I was able to get accurate information to take back to my primary oncologist and discuss with him the course of treatment I wanted and why and back it up with clinical data. To make a long story short I achieved the best possible clinical outcome within the optimal timeframe to give me a normal lifespan, living a good life and in good health. I avoided having a transplant I did not need that had a good chance of killing me or leaving me very ill afterwards while bankrupting me. None of that would have been possible in the old days. Most examples of patient empowerment are not that dramatic, but the key thing is that empowerment is about taking responsibility for your own health and well-being, in partnership with the right medical experts.
Have run into both pluses and minuses with electronic medical records, system still very fragmented. BUT have no records at all from first cancer.
Encounter very sophisticated scammers with websites, social media platforms selling fraudulent cures, information, etc. Done so well that it would be easy to fool many consumers, especially people who are desperate.
Cookies – label you as a patient, impact the ads you see, lead to things like ads for fraudulent drug sales sites claiming lower pricing – no one regulating this
Mobile apps – Marketers keep pushing as the next big thing – Reality is that those most in need of support are being missed. Due to age/computer literacy/inability to afford a mobile device. Some cancer apps, for example, only come in mobile versions.
Privacy – old days you could keep things private. Today it’s all searchable. Forces younger people into the closet, cuts off access to support resources. Beyond that, some sites claiming to be patient support sites are data mining sites. Needs oversight and protections.
With Pat’s deep experience, she made 10 suggestions for providers who want to improve that I have excerpted below with some annotation in italics.
Include patient input in the design and development process, and build in feedback mechanisms.
Don’t assume providers know what’s best (i.e., the old model). Sit down and talk to patients. Often we are more knowledgeable about our needs than your employees. The video in Historic Day in Open Notes put together by physicians describes the contrast between the old and new model.
Do usability testing and such that reflects the real world of the patient user – ie: When you are seriously ill your mind works differently and tasks that were simple while healthy become much more difficult.
Recognize that it takes a unique skill set for someone to communicate the health jargon and technology jargon in a manner that the patient can easily absorb and understand. The end user’s ability to use and understand the tools is what’s paramount. As I said in an earlier piece, Doctors are a Broken Record We Don’t Understand > 80% of the Time and so some providers are borrowing an approach from the Khan Academy.
Figure out how to make things simpler easier, ie: getting all the medical records and testing data in one, secure place.
Do not make everything mobile. People are still on desktops. Patients can face visual, dexterity and other problems. Mobile devices may be cost-prohibitive.
Be transparent. IE: Hospital chain cancer support site buried their name in the Terms of Service. Fool us, and we will out you.
Recognize that old tricks – like best doctor’s lists – no longer work. Patient word of mouth, which is now online formally and informally, can make or break referrals. Physicians who do videos saying XYZ hospital is the best no longer work. Physicians who demonstrate expertise in their area may result in a patient travelling a long distance to get that expertise. Business is no longer just a local market decision when it comes to serious medical conditions.
Provider messaging in social media is advertising driven in most cases, and is not helpful. Invest in people with the right skills and level of maturity for your communications programs. Too many health sites and social media platforms are handled by healthy young people who lack sensitivity to the patient population or how to discuss a serious medical condition. Walmart has made the biggest move yet in fostering domestic medical tourism. Now every cardiac or spinal specialist is competing with Mayo, Cleveland Clinic and others. This will be extended to other conditions. In the ascending “no outcome, no income” era, providers need to also recognize that Patient Engagement is the Blockbuster Drug of the Century. They also are recognizing that there’s a strong business case for patient engagement.
Recognize patients today go to Dr. Google first for information, and it’s the “wild, wild, west” out there. New HIT tools and systems have been under development for years but there has not been a coordinated focus on the consumer side. Wikipedia is often the #1 choice of patients for information. The reality is that the #1 “patient portal” is WebMD with over 100M consumers regularly visiting their site, not the the administratively-focused, silo’ed patient portals that have been a “marketing checkbox item” for EMRs. Sophisticated patient relationship management (PRM), as outlined in the aforementioned business case article, is where patient portal technologies are going. PRM systems recognize that the most important “medical instrument” is communication. There’s no need to reinvent the wheel (a common healthcare provider ill) — they can and should curate the most useful tools they can direct patients to whether it’s ACOR or a disease-specific community if they have tools or information that will be useful. That curation process is immensely helpful for patients as they are flooded with information. Providers can help separate the wheat from the chaff.
Making You the Most Viable Next Hire Being flexible, creative and adaptable in today’s economy is the cornerstone to survival. The job search is no different and, with unemployment rising, requires just as much vigilance. One way you can keep your options open and make yourself even more marketable is by considering Consulting in addition to your quest for full-time employment. Often perceived as an “either-or” scenario, Consulting offers you just as many benefits as it does your “would be” employer:
Track record of Fixing Problems? Career wise, people typically fall into one of two categories: those who thrive on problem solving and the prospect of a new challenge –or- someone who is exceptionally good at steering the ship once it is on course. If the thought of fixing something that is broken appeals to you (versus has you thinking about reaching for the Tylenol), then Consulting might be an avenue to explore.
A More Flexible Interview Quite often, what a company needs is someone to tackle a specific problem, not a new full-time employee. Identifying this in the interview and being able to present yourself as the solution to their problem (at a lower cost), can ultimately create a job tailor made for you and your skill set. No one can compete against that.
Dating Before Marriage A consulting engagement can give you the opportunity to see if this company is a nice place to visit or a great place to live. The only thing worse than a prolonged job search, is ending up in a position that results in you being unemployed again in 6-12 months. Consulting lets you do more due diligence than you could ever accomplish in an interview.
“Consulting” on Your Resume To many recruiters, seeing “consulting” as your current role without any clients/engagements is just a way to dress up being out of work. But, with a list of key accomplishments at those engagements, you show that you are in demand, have more control over your search and are broadening your experience. The latter is extremely important if you are looking to transition industries.
Change Agent For companies looking to make some sort of change internally (and you should like this if you have a track record of fixing problems), consulting is a more preferred approach versus hiring a permanent employee. It is much easier to come in as a consultant, effect the course correction and then hand it off to the internal leadership.
Money Besides the obvious benefit of having income during your search, it also gives you breathing room to be more objective in selecting your next job.
It’s Easier to Find a Job When You Already Have One So much of what makes this true is that fact that when you are employed, you tend to be a bit more objective because you have a “bird in hand.” Consulting (in addition to easing that financial strain, which helps here) can provide the self-assurance that comes along with being employed, which can get whittled away while unemployed.
Presenting yourself as a viable consultant or full time employee isn’t mutually exclusive. Rather, they are simply two sides to the same coin. For the companies where you interview, this will only make you more viable and versatile in your eyes. For you, there is nothing to lose. The worst thing that happens here is you generate some income to inevitable financial strain of your job search. On the other hand, you might just find through this process that you discover your next career move.
Bağdat Caddesi
Gel de parmaklara hakim ol, yapma bir Caddebostan, Bağdat Caddesi nostaljisi şimdi!...diğer bir deyişle 'Karşı taraf' . Cok uzun seneler yazları gittiğim, son yıllarda ise her Türkiye'ye gittiğimde kaldığım Istanbul'un bir başka eşşiz köşesi. 1960'lı 70'li yıllarda köşkleriyle, bahçelerinden salkım salkım sarkan ortancalarıyla, billur gibi denizliyle, 'sayfiye' yeri olmasıyla meşhur Erenköy, Suadiye, Caddebostan.
Dükkanların az, ağaçların çok olduğu, bunca yıl geçmesine rağmen hala güzelliğini koruyan Bağdat Caddesi. On, onbir yaşımdan itibaren yazlarım geçti oralarda. Sokaklarda oynanırdı o zamanlar, öyle pek araba filan geçmezdi. Doyasıya bisiklete binilir, el birakarak gitmek büyük marifet sayılır Erenköy, Saskınbakkal, Göztepe bisikletle rahat rahat gidilir dönülürdü. Deniz için bazı sokakların denize vardıkları noktalarda bulunan kayıkhanelerden saatlik ücretle kayık kiralanır, kadın erkek kürek çekmeyi bilir, kayıktan denize girilirdi. Bazı gençler dalıp iskele ayaklarından midye toplar bazıları ise sığ kumda zıpkınla vatos avlarlardı. Sokaklardan dondurmacılar geçerdi o zamanlar. Simdiki gibi binbir çeşit ne gezer 'Dondurma, Kaymaaak' diye bağıran dondurmacının küçücük arabasında sadece kaymaklı ve limonlu dondurma olur, bazen ise çeşit olsun diye vişneli bulunurdu.
Caddebostan Plajı'nın yanı sıra bir de üyelikle girilebilen klüpler vardı. Marmara Yelken Klubü başta olmak üzere, Balıkadamlar, Caddebostan Yat Klübü ve İstanbul Yelken. Eğer bunlardan birine üyeyseniz veya üye bir arkadaşınız varsa bazı sporları yapma veya izleme olanağınız olur, voleybol, ping pong oynar, kıyıdan yelkenlilerin yarışlarını izlerdiniz. Denizin ortasında ise köfteciler vardı. Bunlardan aklımda kalanı ise mayomuzun kenarına sıkıştırdığımız parayla yüzdüğümüz, veya kayıkla yanaştığımız 'Fıştak'tı. Dönerken yüzülüyorsa demirlemiş kayıklara tutuna tutuna, dinlene dinlene yüzülürdü.
Akşamüstüne doğru herkesi bir 'piyasa' heyecanı alırdı. Saçlar yıkanır, bildiğımız ütüyle ütülenerek düzeltilir, ve (Bağdat) Cadde'ye binbir tur atmaya çıkılırdı. Bir aşağı, bir yukarı. Parkur ise genellikle Santral Durağı'ndan Saşkınbakkala kadardı. O zaman 'cafe' adeti bir elin parmaklarını geçmez, 'Borsa'da yer bulabilmek için hızlı davranmak gerekir, 'Divan' ise gençlere çok pahalı geldiğinden ancak hafif 'yaşı geçmiş'lerin duraklama mekanı olurdu. Hali varaba sahiakti oldukça yerinde olan birkaç genç ise bir aşağı bir yukarı arabayla giderek Mustang veya Corvette'leriyle gelene geçene hava atarlardı.
Geceleri ise açık hava sinemalarının keyfine doyulmazdı. Caddebostan'daki Ozan Sineması'nda genellikle Türk filmleri oynar, çıkınca biraz aşağıda, Caddebostan Maksim Gazino'sunun (MIGROS)yakınındaki büfe'de 'zümküfül' yenirdi (Bir çeşit sosisli sandoviç ) Yabancı filmlerin mekanı ise Budak Sineması'ydı (Şimdiki CKM). Yastıgını kapıp tahta iskemlelere yerleştirdikten sonra, çekirdeğini çıtlatarak izlenirdi filmler. Bazen bu sinemalarda Cem Karaca gibi o zamanın ünlü sesleri konserler verir, bazıları ağaç tepelerinden konser izlerdi.
Sonra sonra o köşkler birer birer yıkılmaya, yerlerin uzun uzun binalar dikilmeye, Cadde'deki evlerin yerlerini dükkanlar almaya, arabalar çoğalmaya, faytonlar yok olmaya, tekerlekli dondurmacıların yerini Algida'cılar almaya başladı. Ama ne mutlu ki tüm büyümeler, kalabalıklaşmalar rağmen 'Cadde'yi bozmayı başaramadı! O hala 'Cadde', İstanbul'un ,Türkiye'nin en güzide caddesi hala boydan boya yürümekten zevk aldığım, bir yerde oturup geleni geçeni izlemenin keyfini her yıl bir iki hafta yaşayabildiğim bir yer.
Galata' ya dogru...
The best way to improve health care requires physicians and other stakeholders
My honest approach for how to improve the care is to support a methodology such as being self-serving. I would like to start a program to introduce a software-based point-of-care tool for obtaining patient feedback. This real time information can be used with clients to positively impact the patient experience, nurse engagement, physician (soft skills) competence and overall quality. In my perspective the criteria for fulfilling the demand for finding the best way to improve healthcare is that it need be simple to implement, impactful and cost effective. The most impact to healthcare improvement will come from process improvement and healthcare provider recruitment AND retention. The by-products will be reduced cost of care and improved patient satisfaction. This applies to hospitals and private practices. Based on current studies and the economy, supplying adequate healthcare to the community is already tough and is going to get more challenging. Recruiting sufficient healthcare coverage will boost revenue and provide some improvement to patient satisfaction (wait time and access). However, failure to retain the medical staff will significantly hurt the outcome. With high demand and low supply, it will be well worth the time and money to present "we have the greenest pastures here". The method mentioned above may be called such as point-of-care through successful implementations that may turn in to popular key parts of process improvement. You need to have some feedback from the patients and the physicians in order to measure the processes that should be or are currently being improved. In order to achieve this you have to create the acronym HOSPITAL to help those in Healthcare recall the numbers of different types of inefficiencies in any medical facility. Those who have been exposed to Six Sigma and Lean have an appreciation for improvement opportunities and generally view things through differently trained eyes that can see within all those facilities. Publishing the results of the similar programs online may offer a transparent access to the consumers to monitor these inefficiencies. Welcoming any feedback relative to this and encourage your staff to consider this method or similar training methods for their teams will be highly critical for the outcome. We have to understand that it is impossible to solve a problem that we are unaware of. By providing even the most basic tools at the lowest level possible, these problems have a way of surfacing. While everyone recognizes that healthcare systems and organizations need to improve, I think not enough time is spent on firstly identifying the key stakeholders, and secondly properly ENGAGING them. I strongly believe that not enough time is spent trying to engage physicians in this process. In my experience too many of these "improvement strategies" are top-down decisions by non-clinical managers who failed to conduct any research into what physicians might want or what stumbling blocks there are/were to get them to adopt the new technologies. EMR/EHR/CPOE are prime examples - all of these require a breakdown in the normal activity flow of providers, as it requires them to either find and log on to a terminal or carry a bulky instrument. Almost all clients and colleagues I have worked with resent and resist those methods. And look how few MDs are part of Healthcare consulting firm teams. IMHO, I believe more energy should be spent engaging rather than alienating MDs as a first step, then doing the same for patients in order to get buy in from the two key stakeholders as I see it. I've always found that engaging these stakeholders on projects from the beginning results in more buy-in and most importantly, better recommendations/outcomes (a better product).
ULTIMATE RESULTS
Ilhan Arsel
BJK FOREVER
Karga kartalların sırtına oturur ve boynunu ısırır. Kartal cevap vermez, kargayla savaşmaz; kargaya zaman veya enerji harcamaz, bunun yerine sadece kanatlarını açar ve göklerde yükselmeye başlar. Uçuş ne kadar yüksek olursa, karganın nefes alması o kadar zor olur ve sonunda karga oksijen eksikliği nedeniyle düşer. Kartaldan öğrenin ve kargalarla savaşmayın, sadece yükselmeye devam edin. Yolculuk için gelebilirler ama yakında düşecekler. Dikkat dağıtıcı şeylere yenik düşmenize izin vermeyin....yukarıdaki şeylere odaklanmaya devam edin ve yükselmeye devam edin!! Kartal ve Karga dersi
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