Archive for October, 2012

Why PCORI made me endure flying through FRANKENSTORM

October 29th, 2012 No comments

I arrived home last night around midnight, after flying north to Bangor from Washington DC. Frankenstorm (the frightening Halloween nightmare that all of us in on the East coast are facing) was just brewing up down in our nation’s Capitol. Because I live north of almost everywhere in the US, it is difficult to get a direct flight home, so I had to take off and land twice. DC to Philly, to Bangor. DC to Philly was a ‘filling your pants’  kind of flight. Philly to home was a piece of cake, comparatively speaking. I realized, that every time I fly, it is like when I had surgery last year….I put my life into another human’s hands….last night, my pilots were heroes to me!

So what drew me to DC when I knew Frankenstorm, also known as Hurricane Sandy, was brewing. PCORI did.

From the PCORI About page:

“The Patient-Centered Outcomes Research Institute (PCORI) is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.”

 Honestly, I didn’t have a clue what PCOR was until I went to this meeting. Getting chosen to attend was a challenge to me, and I was very curious about the work, so I wrote an essay about who I am and what I do. Apparently, they liked it and I was one of 150 (out of 350 applicants)  chosen to attend this meeting.

The focus of PCORI is to involve patients, caregivers, organizations, and other stakeholders in patient centered medical research. Their explanation was to do research WITH patients and  WITH their involvement rather than about or for patients. Rather than becoming a numerator or denominator after a research project (very cold and demeaning), patients will be involved from beginning to the end of a research project. Patients will create research questions, and be part of the process and review of the research. How refreshing.  Anyone can create and submit a research question on their webpage PCORI’s  job is to field and match questions with researchers.  Those people seeking funding for a research project must comply with the rules of PCORI engagement before they are granted funds.

This is my simplistic perception of PCORI and their innovative approach to medical research. I applaud them for doing it.  Imagine this….medical research BY and WITH patients. Let’s face it, patients are the experts about themselves.  Before just recently, that was unheard of. 

The other 149 participants of our DC meeting were from all over the country, and came from all levels and varieties of patient advocacy.  There were doctors, nurses, patients, researchers,  specific diseases foundations representatives (arthritis, breast cancer, Lyme disease, parkinsons,  Kernicterus etc), family members of disease/medical injury patients, survivors of diseases, advocates, activists, consumer advocates …………….   It was impossible to meet everyone, but the ones I did meet were all equally passionate about their causes,,,,and most wore multiple hats…     My hats were, survivor of a loved one who suffered  medical harm, survivor of cancer surgery, healthcare consumer,  nurse, activist, advocate, and family caregiver.   I was surrounded by people just like me, and it was an amazing experience.

So, what do I do with my new contacts, energy, and information?  I can train to become a research reviewer for PCORI, and I am considering that.  I can and probably will come up with some challenging research questions.  I will spread the word about PCORI by writing to my local newspaper.  But, what I want to do most is drive or at least be a passenger in the PCORI RV/bus.   When PCORI decides to use my suggestion to do a nationwide PCORI tour to raise awareness of their work, and to hold  town meetings about Patient Centered Research in every corner of the US, I want to be there. My PCORI partner (chosen for me by PCORI prior to the meeting) had the great idea of town hall meetings, so maybe she can join me on that bus. Last night when I left, one of the leadership people told me the driver of the bus had to have a tattoo……it would be a first for me, but I am willing to do that to be part of the PCORI tour.  That is how important I think their work is.

Who gets to say that Healthcare is Patient Centered?

October 23rd, 2012 2 comments

Patient engagement and Patient Centered Care are buzzwords and trendy goals of primary care doctors, Hospitals and other providers these days. I will attend a meeting with PCORI, or Patient Centered Outcome Research Institute starting on Friday. Before I go and absorb what the other 149 stakeholder attendees have to say about Patient Centered Care, and I forget what ideas are mine and what are somebody else’s, I am going to write this blog entry.

There was a day when becoming a healthcare worker was considered a calling. That calling was rated right up there with becoming a nun or a priest. It was kind of a sacrifice, a career chosen to be in service of society and sick people. There have always been different levels of caring. Some cared more than others, and some were just plain mean spirited..(nasty tempered crotchety nurses and doctors were not unheard of for sure). But, generally, becoming a medical worker meant your patients came first, and you genuinely cared. You didn’t just care because you were paid to. When you cared for patients, you didn’t consider what kind of insurance they had, or if they had any at all. You didn’t worry about who they were or where they came from. You never judged them. You just knew they were sick or injured and vulnerable and they needed your comforting and help. You gave that help/care unconditionally. I’ll admit, that was difficult sometimes, like the time I had to triage an arrogant young murderer and rapist of a little girl , or when I had to care for the young woman who beat my son black and blue when he was only 3 years old, while she baby sat him. But, I was never cruel to anyone, even those despicable people.
I didn’t recognize it during my years working as a nurse, but I believe I was delivering patient centered care. Of course, I never asked them how I was doing, so it might be a little arrogant of me to say that.

Now we have corporate centered money making care, government centered care, rich vs poor centered care, political centered care, and provider centered care.

The quality of care that a person gets now depends on way too many factors. Money is #1. If you do not have good insurance coverage, you will find it terribly difficult to find a practice that will care for you. Some say…that’s no problem…just go to the ER. The ER does not give patient centered care. They treat a problem, not the entire person. Healthcare maintenance and necessary screenings are not provided in ERs. If you cut yourself they will sew you up, but you will not get your hypertension or other chronic illness treated there. They only treat the immediate problem.

If you do have good insurance, there may be some who will take advantage of that and order studies that are not necessary. Automatically doing an MRI for back pain is not patient centered care…that would be money oriented care. MRIs are very expensive. Advil, heat alternated with ice and some gentle exercise may cure your back pain and at a much lower cost, to both you and your insurer.

Balance is necessary for care to qualify as patient centered.
This is a list of components that I think are absolutely necessary to qualify care as Patient Centered.

1. The patient is at the hub of their care
2. The patient is revered, respected and deferred to on all decisions
3. The patient makes the final decision on care
4. Questions are encouraged and answered.
5. All alternatives, including no care at all, are discussed and the advantages and disadvantages of all.
6. Possible complications, including possible harm and or infections must be part of the discussion of alternatives. Real time patient safety and quality data will be readily available on hospitals and other healthcare settings, and on providers.
7. No one will be asked to sign an “informed consent” until they are informed.
8. All projected costs would be laid out for the patient.
9. The patient’s age, healthcare status,  medical literacy, cognitive skills, abilities and disabilities, cultural beliefs, and all other particulars about the patient will be considered in recommendations and decisions about their healthcare.
10. Decisions on end of life or comfort care will be the decision of the patient as long as they are competent to make that decision. All patients will be encouraged to assign a durable Power of Attorney, and write a living will.
11. All possible preventative education will be provided to patients prior to treatment and/or hospitalization when time allows or during Hospitalization during emergencies
12. Appropriate screenings will be done according to age, and the care or procedures that patients are facing. Unless emergent, procedures will be delayed if screenings indicate that the patient is currently at risk if they have elective procedures.
13. A trusted bedside advocate will be with the patient if they want, at any time of day. Restricted visiting hours would be eliminated.
14. RN to patient ratios would always be appropriate for the level of care being delivered.
15. Long waits in waiting rooms and for assistance when hospitalized would be eliminated.
16. If things go wrong, honest immediate disclosure would take place and assistance (emotional/financial/other) in dealing with any harm would ensue. Patients would never be charged for costs associated with preventable healthcare harm. Patients and their families would become integral in the root cause analysis, and considered part of the solution so other patients would not suffer through a similar preventable harmful event.
17. Second opinions would be encouraged and a matter of routine. All insurances would reimburse for second opinions.
18. Patients will be able to request their records or at least a look at their records and there will be no reluctance or altering of records by the provider. Better yet, the patient can access their entire health record online.
19. Patients would not be expected to leave their free will at the door of a Hospital or other healthcare setting.
20. Patients would be cared for in freshly disinfected room with clean equipment, and never in a room with another patient. This eliminates chances of contracting an infection from a roommate or being mistaken for the roommate, and will be more conducive to having an advocate with the patient. All healthcare workers would wash hands with soap and water before and after any patient contact and it would be done without reminders from Patients or families.
21. Verification of patient identity and staff identity would be routine, particularly prior to procedures and medication administration. Evidence based bundles and check lists would always be used , observed, and mandated.
22. Only recipients of care get to declare if the care was Patient Centered.

This is a long list, I know, and it is probably incomplete. I can add to it anytime. I welcome additions!

Great healthcare outcome. Luck or planning?

October 17th, 2012 No comments

It’s weird the things you remember…maybe even more weird the things you forget. One year ago today, I got my diagnosis of uterine cancer. I remember that phone conversation with my doctor almost word for word. It was alarming, but it didn’t really floor me. I just knew I had to get busy…and I got busy. I found the best GYN oncologist surgeon in Maine, and the best hospital to have my surgery in. Other than a long delay for an appointment and surgery, my experience was stellar. I am one of the lucky ones….or maybe it wasn’t all luck. Maybe it is what healthcare leaders and consumers are calling Patient Engagement. Every patient should do their homework before asking their doctor questions about prognosis, alternative care, and other things. Then they should research all that is availa
ble about their providers and learn about possible complications and what they can do to avoid them. I honestly think that preparing for healthcare…surgery or other procedures….is half the reason that some patients do better than others. Watch your caregivers…trust them to do right, but don’t assume they will….get them to wash hands, and not touch you unless it is with clean hands. Follow advice on showing up clean for surgery (antibacterial showers for a few days before), get a MRSA screening done, and have a trusted loved one or friend stay with you in the hospital. I did all of the above and more….and look at me today. I am cancer free and I had absolutely no surgical complications. I don’t consider myself a survivor…cancer was just a temporary condition that I managed to get rid of with some incredible help. I was very lucky, but I was also very careful making my choices.