Wednesday, November 20, 2013

Wednesday, November 6, 2013

Patient Advocacy: Becoming a Professional Patient-Advocate

www.patientpower.in
Private, professional patient advocacy is a new, non-certified practice

There is no diploma or degree programme offered in India to get certified as a patient-advocate. The profession is so young that there is no accrediting agency or licensing body that has developed standards for certifying the skills of patient advocates.
Even in other parts of the world, there are just a few “certificate” courses but no universally agreed-upon standards for certification. Further, since institutes offer different curricula, have different eligibility criteria for admission and follow different approaches to programme delivery (online or offline), the quality of their student output varies accordingly. For example, while Sarah Lawrence College (http://www.slc.edu/) in New York offers a Master’s level programme in health advocacy, Cleveland State University (http://www.csuohio.edu/) runs an online programme on patient advocacy, and both are in demand.
How to choose the right programme?
Begin with a need gap analysis – figure out what is needed in your skill-set to best serve your clients and then scout for a school or a programme that most effectively addresses that knowledge gap. Next, determine your budget. How much can you spend? The key is to weigh value against possibilities. Figure out how much you can spend by determining how easily you’ll be able to pay yourself back. If you are already employed somewhere, taking a long sabbatical to finish a one-year programme may not be practical. In that case, hunt for an online programme. You’ll find plenty of courses that answer your specific training needs. Maybe a short series of weekend courses would give you a better return on your investment.
If your means are limited, find out about scholarships, equated monthly installments (EMI)
schemes, discounts and other funding opportunities that would spread out your outflow over
a period of time.

Who makes a good patient advocate?
Generally, anyone with empathy makes for a good advocate. Advocates who assist elderly
patients and children need plenty of patience. Those who prefer to work with insurance and
billing clerks need to understand how these departments work and they must be good at
number-crunching.

Good training will teach you how to…
  • Improve patient and family experience in a hospital
  • Engage patients and families in the patient’s care
  • Promote patient-and family-centered care
  • Reduce medical errors by educating and empowering patients and their families about the care plan
  • Give voice to healthcare consumers and their families in a complex healthcare scenario
  • Reduce fragmentation and duplication of work
  • Assist in cost reduction
  • Reduce frustration and restore patient trust in the deteriorating healthcare system
  •  Practice a new model of care coordination
Nurses, lawyers, medical assistants, medical billing clerks, retired doctors and counselors have
the right employment history and experience to be ideal candidates for this job. Some patient
advocates also specialise in health care reform, public education, and legislative matters.
Hospitals also provide in-house training to new recruits which is important, as patientadvocates
need to be knowledgeable about the systems and processes of their employer.

Patient-advocates need to wear many hats and master many skills.
Be professional
If you don’t exemplify professionalism, how
will you be able to expect it of others? Make
sure you have a website that your patients can
log onto for all their health information needs.
The design, messaging and layout of your site
should be extremely simple and accessible to
lay patients. The navigation should be smooth
and the design must be uncluttered.
Be accessible
As smart phones are becoming more popular,
it’s essential to have a mobile version of your
website. Encourage patients to call you from
their smart phones to seek directions to your
office, schedule appointments or find out
about your services.
Be knowledgeable
One of the best ways to secure the trust and
respect of your patients is to demonstrate to
them that you are an expert in your field. Display your loyal patients’ testimonials on your
website. Maintain a patient library or begin to run a blog so that patients come to you looking
for help, instead of Googling for information.
Build trust and loyalty
A happy patient should be treasured. She will be happy to sing your praises to others - and
word of mouth marketing is worth its weight in gold. Successful patient-advocates wield a lot
of clout. If you do well, hospitals will roll out a red carpet for you and doctors will treat you
(and your patients) as VIPs because you are a good source of patient referrals.
Be able to communicate
Patient advocates serve as liaisons between the patient and his family and doctors, nurses and
health insurance companies. You need to engage with a wide spectrum of people. You have to be an active listener and be able to present your patients’ concerns to the doctors in a
manner that gives them access to the right care.
Be well organised
Patient-advocates must be good record-keepers. You have to fix appointments and follow-up
with doctors, as well as maintain and update patient records in a timely fashion.
Be able to solve problems
A patient advocate’s job is challenging, but if you like tackling problems, the role can be
extremely satisfying. You need research skills and analytical abilities to master problem-solving
techniques, and should be able to sift through loads of information and keep yourself updated
all the time, much like investigative journalists.
Be patient
You will need tons of patience, if you want to learn to protect yourself from burn-out.
Questions you should ask your trainer
Before you join an institute or enrol for a programme, it might be a good idea to ask your
trainer:
99 What is the career path for patient advocates?
99 How long do they typically stay in their jobs?
99 What kind of training and educational programmes do you offer?
99 Are these courses certified?
99 How much would the programme cost and what would be its duration?
99 What do you cover in your content? Do you follow a case-study approach?
99 What are the most challenging aspects of patient advocacy?
99 What are the most engaging aspects of patient advocacy?
Since it’s a long-term investment that you are making in yourself, choose your programme
with care, and after doing in-depth research on the available options.
The truth is that the practice of patient advocacy, just like the practise of medicine, is
complicated; it is an art as well as a science. A good patient advocate is learning all the time. A
patient advocate masters her profession by investing years of training and experience, so that she can identify a problem; make the right decision; and react within a few minutes, till this
ability becomes nearly instinctual. When navigating the healthcare system, time can be critical,
hence the need for humility, experience and expertise.
As with any other profession, patient advocates need to follow a Code of Ethics. The following
principles are very useful as a guideline.
Principle 1
Objectivity: The role of the Professional Patient Advocate is to represent the patient
and family first and foremost, regardless of who employs them.
Principle 2
Scope of Practice: The Professional Patient Advocate must work within her scope of
practice. Other members of the healthcare team should be utilized as needed to meet
the demands of her patient.
Principle 3
Full disclosure of services, fees and length of time services will be performed:
The Professional Patient Advocate must provide to the patient and his family a document
that fully discloses her role and function, as well as the fees and services the patient
advocate will perform.
Principle 4
Confidentiality: A Professional Patient Advocate should obtain a consent that
authorizes the patient advocate to speak and act on behalf of the patient.
Principle 5
Promoting Autonomy: The Professional Patient Advocate’s role is to educate and
empower the patient to make informed decisions based on his individual wishes and in
keeping with his cultural, spiritual, religious and ethical beliefs.
Principle 6
Accountability: The Professional Patient Advocate is held accountable for the work
done on behalf of her patients.
Principle 7
Continuous Learning: The Professional Patient Advocate commits to continuous learning in order to keep up to date on clinical matters and with trends and advances that impact patient care.
The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.


Tuesday, November 5, 2013

Patient Advocacy: Providing Access to Alternative Treatment


www.patientpower.in

  • Healthcare is never provided in a vacuum - it is always embedded in a cultural context
Have you ever wondered…


  • Why patients from one community often reject one form of medical treatment, but readily accept another?
  • Why some patients follow their doctor’s advice, while others do not?
  • Why some people prefer alternative healers for some form of illnesses (e.g. insomnia, indigestion etc.) but not for others (e.g. diabetes and high blood pressure)?
  • Why one ethnic group has a higher incidence of certain diseases (e.g. diabetes, hepatitis C etc.) compared with another? 
  • Why some women abruptly change their diet patterns during pregnancy or breastfeeding in ways which may be harmful to the health of their child?
  • Why are some conditions such as obesity regarded as “diseases” in one 
  • culture but not in another?
The answer is because every culture has a different world view about the body and health - and
we all unconsciously absorb this view and look at our health through this prism. Healthcare
is never provided in a vacuum, it is always embedded in a cultural context. In a perfect world,
both doctor and patient would share the same prism, leading to optimal health outcomes.
However, it is when the doctor and patient have differing worldviews that a conflict arises.
Dissatisfaction with the modern doctor’s obsession with technical minutiae and his desire to
“treat” lab reports and scan images leads a number of patients (especially among the minorities
and economically weaker sections) to seek alternative treatment options. Not only do they
find these more cost-effective, they are also more aligned with their personal perspective on
health. This has led to the increasing popularity of alternate systems of medical care.
Western medicine doctors are often not comfortable with these alternative options
because they do not understand them. They feel that these have not been adequately studied; that
they have not been subjected to controlled clinical trials to prove their efficacy; that their scientific
basis is unproven; and that a lot of alternative medicine practitioners are quacks who prey on
the patient’s gullibility. This often leads to conflict, where the patient seeks an alternative medicine
doctor, without informing his doctor that he is doing so. This kind of hide and seek confuses the
patient and his doctor – and leads to poor health outcomes. It’s far better that the doctor should seek the help of a patient-advocate, who can then refer the patient to reliable providers of alternative treatments and complementary medicine.
Using integrative medicine, advocates help patients combine the best of both the worlds –
Western Allopathy with homeopathy or Ayurveda, depending upon the patient’s preferences.

Typically, an integrative approach is based on the following principles:
  • Our body has the ability to cure itself
  • Healing practices must be individualized, because every patient is unique
  • People are responsible for their own health. Patient-advocates can only guide them in choosing a set of therapies that might work the best for them
  • Healing must aim for a balancing of mind, body and spirit
Let me illustrate this point with the following example:
A 45-year-old patient was once diagnosed with a cyst on the left side of his neck that biopsy
showed was cancer. The patient rejected the diagnosis and over time the cyst grew in size
and eventually turned into an inoperable tumour that had spread to his jugular vein. The
oncologist knew that chemotherapy and radiation offered the only ray of hope, but since the
patient was still in a state of denial, the doctor arranged for a consultation with a patientadvocate.
Along with accompanying him for his chemotherapy and radiotherapy sessions, she
also arranged meetings with a yoga therapist; and had the patient attend meditation classes.
The combination of therapies worked. Everybody watched as a robust person, who had got
reduced to a skeleton and could no longer swallow because the radiation had destroyed his
oesophagus, started regaining his health bit by bit. Then the day dawned when this patient
tested negative – the cancer had disappeared. Earlier, he had been given eight months to live.
It has been over three years now and this patient is still alive and kicking and lives his life to
the fullest.
Integrative medicine has many streams, including:
Osteopathic Medicine: Osteopaths believe in the healing power of the body and in rebuilding
its strength.
Functional Medicine: One of its basic principles is of biochemical individuality, i.e. treatments should
vary based on genetic and environmental factors.
Traditional Chinese Medicine (TCM): includes approaches such as acupuncture, and ancient herbal
therapies.

Ayurvedic Medicine: combines herbal therapy with strict dietary recommendations.

Naturopathic Medicine: Naturopathic doctors (NDs) combine diet, exercise and lifestyle changes
in their treatment approach..

Homeopathic Medicine: This therapeutic method was developed by the German physician Samuel Christian Hahnemann at the end of the 18th century.


QUIZ TIME: Is Your Patient Ready For Alternate Care?
As a patient-advocate, before you offer alternate therapy for the patient,
ask her …
  • What do you hope to gain out of this therapy?
  • Would you like to talk to a patient about their experiences with these therapies?
  • Would you like to do more research more about this therapy?
  • Are you aware of the side effects of this therapy?
  • Will this treatment interfere with the other treatments that you are taking?
A patient who responds satisfactorily to these questions makes for an ideal candidate for
alternate therapies.


The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Sunday, November 3, 2013

Patient Advocacy: Facilitating A Second Opinion






Patient-advocates have the right contacts to be able to arrange for a second or third medical opinion for the patient
Your doctor drops a bombshell. He tells you that you have a very serious ailment. The news strikes you like a bolt from the blue. You feel worried, anxious, defeated and confused, until, your spouse, who is also concerned about your health, suggests you don’t take the doctor’s word as final and seek a second opinion. You immediately feel relaxed. In this case, your spouse has acted as your advocate.
One of my patients had an interesting experience to share, “I had a lump in my neck. It was causing some sinus issues. My doctor sent me for a CT scan and when the results came back, he told me that it was tumour and had to be removed right away. I felt shocked and unsure of what to do. I called my sister who suggested that I call her doctor, someone she had consulted all these years on all her medical issues and trusted completely. I sought an appointment with my sister’s doc. He asked to see my CT scan along with a few other lab reports. Armed with all those reports I landed at his office. He examined them and said what my doctor was calling a “tumour” was actually a benign growth and it had been there for at least one decade without changing in size or shape. He also said surgery was unnecessary. I felt massively relieved.” In this case, the patient’s sister played the advocacy role by providing timely advice.
Once, at a patients’ group meet, an elderly man in a wheelchair raised his frail, trembling hand and asked, “How do I know whether my doctor is giving me the right advice?”
He had a point. You can’t go by a single doctor’s advice about a serious condition - you need to have it cross-checked with another. After all, your time, money and life are at stake. Doctors, especially busy doctors, often rush into making a diagnostic pronouncement, without always dotting all the “i”s and crossing all the “t”s.

A “patient advocate” can be a God send in such scenarios. He could be a spouse, a friend, a
brother. Since a caregiver is generally a person on the “inside,” they are in a good position
to know and understand the needs of a loved one. She may not have the necessary medical
background, but her knowledge of the patient’s desires are equally important in making the
best medical decisions.
Banish the thought that a patient-advocate is an adversarial position. It doesn’t necessarily
mean being a doubting Thomas, and rushing out and getting a second opinion on every matter,
or logging on to the internet and conducting your own research and confronting a doctor
with your findings. It doesn’t also imply slipping on the boxing gloves and declaring, “Hey, I am
on the other side. So Beware!”
What it means is that you are careful and wise. You don’t doubt others, but you do crosscheck
important information. It means that even if you decide to do your own research or
obtain a second opinion, you will speak about this to your doctor. A good doctor should
appreciate your transparency and this will strengthen your relationship. Remember, effective
patient advocates do not breed discontent; they build long-lasting relationships between
patients and their doctors.
Physicians are bound by a code of medical ethics that directs them to co-operate fully with
their patients. If patients want to take a second or even a third opinion, doctors are legally
bound to share your lab reports, prescriptions, and test results with other physicians. A doctor
worth his salt would not feel insulted by such a suggestion. In fact, if your doctor discourages
you from seeking another opinion, you have every reason to suspect his motives – and this
should motivate you even more to seek another opinion. Generally, a patient-advocate will
advise a second opinion when:
You don’t have confidence in your doctor. Patients are less likely to follow a course of
treatment when it’s prescribed by a doctor whom they don’t trust.
You think there might be other treatment options. If your doctor tells you there is
only one course of action, it should raise a red flag.
Your doctor dismisses your concerns. You know your body best, and if your doctor
doesn’t listen to you or take your symptoms seriously, go see someone else.
You’re not getting better. Medicine is as much an art as a science, so a fresh viewpoint
might make all the difference if you’re not recovering from an illness or surgery at the pace
you expected.

You’re doctor recommends surgery. Anytime your doctor recommends an elective
surgery to correct such problems as back pain, cataracts, gall stones or hernia, consider a
second opinion.
Your condition is uncommon. Some conditions are so rare that a physician may have
seen only one or two such cases in her career. It’s worthwhile to consult a doctor at a major
medical centre who has more experience with dealing with rare diseases.


The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Friday, November 1, 2013

Patient Advocacy: Arranging Concierge Services



www.patientpower.in

A patient-advocate won’t let a patient feel like a medical statistic. He can make him feel like a special customer
When Nisha Malhotra got diagnosed with brain cancer, she knew she needed to make a few urgent decisions and that she needed the help of a compassionate, knowledgeable patient-advocate.
Abroad, retired general physicians often use their years of clinical experience and expertise to become patient-advocates in order to help patients like Nisha identify specialists, treatment protocols and facilities which are renowned for being world-class for treating her disease. Some mature into specialist patient-advocacy firms, taking on board former healthcare administrators and registered nurses. They function like mediators, helping connect patients with doctors and vice-versa. When required, they also negotiate with insurance companies on patients’ behalf.
Although many patients are net savvy and can access most health-related information online, it still takes a lot of time to research your condition, find the best experts, and negotiate with insurance companies. In cases of rare or chronic illnesses, accessing these services poses an even greater challenge.

Abroad, government-funded wellness programmes offer concierge services and provide
patient coaching, resource mobilisation, rehabilitation and disease management. These services
are generally customised to individual patients and their families, and continue long after the
medical procedure is completed.
A mother of two who works as a school teacher, Sangeeta Chuhan was finding it difficult
scheduling a meeting with a paediatrician for her eight-year-old daughter. She was surprised
how fast the appointment got made through a patient-advocate, in this case a friend of the
paediatrician’s secretary. In India, since the practice is still evolving, you may not easily find such
advocacy firms, but there are always people around you, who perform this role informally.
These people can:
  • Assist you in locating doctors, specialists, and treatment facilities locally and
nationally.
  • Help you organise your medical records, including current prescriptions, drug
allergies, past surgical history, and other
data.
  • Draw up an individualised medical plan,
based on the doctor’s medical advice,
set medical goals and explain and help
you adhere to the various treatment
protocols.
  • Avoid irrational drug combinations through diligent case management.
  • Let’s face it – it’s not possible to receive good medical care unless you learn to effectively manage that care. Patient advocates can help you do that.
In addition, they can:

  • Schedule medical visits (physician appointments, lab visits, etc.), when they are due and send reminders to you.
  • Accompany you, if no one else from your family is available.
  • Take notes during the consultation and make a record of it, afterwards.
  • Arrange for your transportation.
  • Co-ordinate visits with allied health professionals, such as social workers, physical/occupational therapists, nursing home staff members etc.
  • Make alternate living arrangements (e.g. assisted living facilities) for you, so that your dignity, independence, safety, and social life are not compromised by your illness.
Given the vast number of hospitals and medical specialists who claim to deliver cutting edge
care, it’s becoming impossible to manage and understand all the information flying around.
Patient advocates sift and sort through this information, de-codify it and present it back to
you in lay-friendly language. In this process they:

  • Relay physicians’ diagnosis and lab results in a simplified language, devoid of all
medical jargon.
  • Sort your medical records and help in storing these in an orderly fashion.
  • Co-ordinate crisis management and are available on a 24/7 platform.
  • Keep family members informed of the patient’s progress.
Health care advocates are trained professionals who are familiar with the ropes of the health
care system. When Neeti Chandra’s husband got diagnosed with bladder cancer, she was in
such a state of shock, that she did not know whom to contact or where to seek help from.
The doctor had made his depressing pronouncement but thanks to the consultation offered
by a second oncologist recommended by a friend, three years later, Neeti’s husband is hale and
hearty and thankfully still keeps his bladder. Fortunately, this friend had a nursing background.
She also had the right contacts. She made appointments, accompanied the couple to the
hospital; explained their lab results and stood by them throughout the difficult period. She
would even type out medical notes after each appointment with the oncologist, monitor the
patient’s progress and obtain regular updates from the doctor’s team. Smita and her husband
would have been completely lost without her. That’s the kind of invaluable help a patientadvocate
can render.


The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.