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Managing Uncertainty – A Magic Lever for Best Health

By Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist

People at the center of care (individuals, caregivers, family networks, and healthcare professionals) crave knowledge to make sense of and make decisions about their health journey. We need information we can understand that’s relevant to us and our families. Unfortunately, it can seem dry like a desert or like drinking water from a firehose, often dirty water.  It ranges from no useful information to a flood from friends, acquaintances, the media and health professionals. It’s bewildering. My first neurologist said, I know about medicines and procedures for populations. You are an individual. I need to learn about you, what’s important to you, test stuff to see what works, so we can decide what to do next. I say, what about acupuncture, massage, and diet.  He says, I am not an expert in other treatments, but I can learn. Whoa! Now here’s a guy I can work with!!! What I learned was that there is very little science that is absolutely always true – We need to breathe clean air, drink plenty of clean water and eliminate regularly. Those are certain. Otherwise there’s uncertainty in almost everything. How do we understand, communicate, and manage uncertainty? Managing uncertainty is a magic lever for best health. Let’s keep exploring this lever.

Engagement after the Olympics – a Marathon not a Sprint

By Advocate, Leader
 I’m watching the Olympics a lot this week. These athletes are so focused and consumed with their event. Many of us committed to participatory health have a similar focus in our health journey or the health journey of those we support – head down, training, grinding, overcoming the next obstacle. Eventually, periodically we can take a moment or an hour or more to look up and take in the landscape. Our outward attention is dear. What’s the road map for expanding the circle of a participatory health care culture?  How do we make best use of those moments to engage others? I’m a person who likes to have an impact and enjoy myself in the process. I think about the culture of health care pretty broadly. We can impact our homes, our extended families and networks, our communities, our clinics and doctors’ offices, our institutions, and our government. Remember, while most chatter is about health care within institutions and government, in balance most happens outside in families, networks, and communities. So, list those scenarios, locations, subjects that you have a passion for. Show up. Find others you meet who are trying to have an impact – for me its this blog, the Society of Participatory Medicine, HIMSS’ Connected Patient Committee, PCORI, and now my town’s Disability Commission. Note those you see as a role model – engage them, copy them, join them. The good news is that there’s so much opportunity. If you try something that doesn’t feel right-no impact, not fun – there’s always something else to try. Move along-again your energy is dear. Meanwhile, take care of yourself – you’re dear to us. This is a marathon, not a sprint.

PCORI- Patient Centered Outcomes Research – and us

By Advocate, Consumer, Leader
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. It’s vision is that patients and the public have the information they need to make decisions that reflect their desired health outcomes.  So far PCORI approved 51 awards, totaling $88.6 million over three years, to fund patient-centered comparative clinical effectiveness research projects. I’ve spent the last month reviewing applications for grants.  I can’t tell you about the grant applications that I reviewed but I can remind you why this important for us and give some observations about the process. Read More


By Advocate, Leader
Innovation: such a pregnant word. Innovation usually accomplishes something pretty basic – a solution to a problem we know or don’t know we have, a new or long standing problem. Innovation can be a tool, a process, technology, or a service. Innovation includes widespread use of the solution. Setting diagnostic or clinical treatment aside, the health journey for the whole team primarily involves people: behavior and relationships. Innovation in health behavior and relationships leads us to magic levers of best health. This week I heard about primary care teams that weren’t built around the licensed clinicians (physicians, physician assistants, nurse practitioners, nurses) The key people seemed to be the patients, their caregivers, and the offices’ health coaches (5-7 coaches per clinician). Patients have assigned coaches to partner in their health journey and serve as a bridge to services and clinicians. I was hearing about Iora Health and Mass General’s Center for Primary Care Innovation. This could be innovative! It’s a magic lever. Phew!

I say could be because the challenge with so-called innovations such as health coaches is to accomplish  widespread availability. What did it take to nurture that potential innovation and how does it spread? Well, somebody was dissatisfied with the status quo, became an entrepreneur and had the gumption to find or create a space for the idea, process, and service to germinate and flourish. The entrepreneur(s) had to align incentives (funding to develop a test and a payment model to feed the service) in a market that needed and wanted the result. It takes a very different kind of change agent to create and pilot something than spread it.

Data, information, knowledge, wisdom, action

By Advocate, Caregiver, Leader

I have written about data and research in recent posts. Readers generally understand about data that is in their electronic medical record (EMR), but several readers have asked me about my interest in patient centered outcome research (PCOR). How does this affect me?  Why your interest?  Let me explain: The field of knowledge management speaks of DIKW Hierarchy (Data, Information, Knowledge, and Wisdom). For our purposes Data are individual observations, sensations, or facts about our health – temperature, pain level, calories, etc. Information adds context and makes some sense of the data: getting warmer, less pain, eating more. More useful than data. Knowledge takes information further: lower fever + less pain + eating more = feeling better. Wisdom is the so what? Leads to doing the right thing. Data, information, knowledge, wisdom lead to Action. You’ve heard me write about Just-In-Time Decisions. I care about having the information and knowledge to make decisions about our health. Data is collected and reported about us by us and by others either directly or through technology. Our health team (patients, caregivers, clinicians) takes that data and turns it into information and sometimes knowledge. Research helps turn data about many people in similar situations into information and knowledge. Only patients and their caregivers step on to wisdom and action. So research can help us get to wisdom and action if:

  • it asks the questions patients and their caregivers ask about best health,
  • patients and their caregivers have access to the research showing what has worked and what hasn’t, and
  • it helps patients and their caregivers make decisions leading to action in their best health journey.

So, I follow and advocate for patients and their caregivers in the research world as I am able. I write about it to keep you informed and to stay grounded in what is important about research. You, my readers, inform my knowledge and wisdom, and guide my action. Thanks. Keeps it up.

Funding Impacts Patient-Centered Research

By Advocate

I wrote about Patient-Centered research in a previous post:  Just-In Time Decisions. A different version of that post appeared in the Society of Participatory Medicine’s blog. Susan Woods responded to that post with the research funding system doesn’t really work for anyone. It is in concrete, Agreed. It always helps to follow the money.

I am a member of a Boston-based contingent of ambassadors to PCORI (Patient Centered Outcomes Research Initiative). We made three recommendations to the PCORI Board in November. This is a summary of the second recommendation.
Patient-driven, patient-centric research opportunities are less likely to be prepared to submit fundable proposals to PCORI than traditional research teams.
Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring. We’re all patients is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.
We found that
  1. PCORI’s current structure of supplying large grants to a small number of projects favors established research teams and paradigms.
  2. Alternative, nacient teams are less likely to receive highest scores in grant proposal requests.
  3. Research projects addressing partnership innovation, cultural change, social and behavioral determinants, or dissemination are likely not to be funded.
Therefore we recommended that PCORI:

Allocate a defined proportion of funding for a larger number of smaller projects in the form of micro-grants that either prepare a submitting team for a high scoring large grant or addresses research into partnership innovation, cultural change, social and behavioral determinants, or dissemination.

Apparently, PCORI is considering this recommendation. I’m looking forward to following their next steps.

Just-in-Time Decisions

By Advocate, Caregiver, Consumer, ePatient
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
  2. Will the treatment prescribed (any treatment) cause depression?
  3. Will acupuncture make a difference?
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford…
Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work. Need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:
Expand the scope of fundable research questions to include non-diagnosis related questions:
  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health
What do you think? What are the magic levers for this change?

So Many Decisions

By Caregiver, Consumer, ePatient
So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I  eat this, should I buy that insurance, should I see both doctors on the same day, and on and on and on. Clinicians and e-patients approach decisions so differently. For clinicians its studies published in academic journals that show an increased likelihood that x works better than y for a specfiic population. It’s habit and common community practice. For e-patients it’s often spur of the moment decisions, trusting someone. It’s about me.

Yesterday, I attended the Board meeting of PCORI (Patient-Centered Outcomes Research Institute).  I wrote about PCORI in a previous post. PCORI could transform some research about health. See the notes of the meeting  here. A group of e-Patients made three recommendations to the PCORI Board in the public comment period:
The PCORI Board addressed the challenges of being patient-centered several times in their deliberations. They asked, what is a patient? Is it someone who is sick or caring for someone sick? What about the well – the worried well, or those preventing sickness?  Should patient engagement in research mean that patients should speak to each other in patient advisory groups or should they foster melding of the silos of patients, researchers , advocates, vendors, and providers? How should they foster and hear advice from patients? What projects should they prioritize that are most likely to impact patient engagement and experience?
So many decisions to make in the journey to best health.

Patient Centered Outcomes Research

By Advocate, Caregiver, Consumer, ePatient, Leader
I attended the PCORI workshop in DC last weekend. Congress authorized PCORI The Patient-Centered Outcomes Research Institute (PCORI) 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 intends to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options. About 130 attended: patients, patient advocates, representatives of disease specific organizations, researchers, clinicians, home schoolers. PCORI aligns well with my personal mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.
My main takeaways from the weekend are:
  1. Current research focuses disproportionately on the medical end of the health spectrum. Which therapy (mostly drugs) works better? Many participants would like to shift focus of research to the social and behavioral factors on the spectrum. Social factors are the conditions in which people are born, grow, live, work and age, including the health system. Behavioral factors include risky behavior, developing and following health plans, management of stress, pain and illness
  2. The gold standard of double-blind studies does little to help those confronting illness make decisions. As my neurologist tells me, it’s very challenging to apply research about populations to people. I am not a population. There are other models of sharing information and building on experience.
  3. Dissemination of research results is last funded and least rigorous. Many results are not published. Most patients don’t read peer-reviewed journals.
  4. The power gradient in research favors those managing the money. Rather than researchers seeking consumer involvement, communities could control the funding and seek researchers
  5. Health disparities affect communities (the unfair and avoidable differences in health status shaped by the distribution of money, power and resources at global, national and local levels). Research into health disparities can inform action by self-defined communities.
  6. The reservoir of experience, expertise, passion, and commitment of the PCORI participants is awesome, deep and diverse. I  am humbled to be included in this movement.