Category

Advocate

Engage! Will patient engagement achieve “warp speed” this year?

By Advocate, Caregiver, ePatient, Clinician, Leader, Consumer No Comments

Engage! Will patient engagement achieve “warp speed” this year?

A fascinating HIMSS LinkedIn thread started by Brad Tritle (@BTritle) on January 9, 2013, with 100 posts through January 23, 2013 by 46 Individuals (31 single post, 15 multiple posts) – 18 pages. The full thread can be found here. I had great difficulty categorizing and summarizing. I started trying to use the National eHealth Collaborative, Patient Engagement Framework: Inform Me, Engage Me, Empower Me, Partner with Me, Support My e-Community. The exchange was more: Culture/lifestyle, Experience/literacy/diversity/education, Reimbursement/incentives/cost, Community/coordination, Clinician engagement, and Access/technology/interoperability/portals. The thread included 24 links. They are compiled here. The extract can be found below. Here are some pearls: Read More

Open Notes

By Advocate, ePatient, Clinician, Consumer No Comments
What information is there about me in my medical record? There’s certainly diagnosis, medications, procedures, allergies, treatment plans, referrals, diagnostic test reports (labs, radiology, EKG, pathology). I have more access to that information these days through visit summaries given at the end of the visit and on the different portals my providers have. But what about the notes they write? What is in those notes? How the plan /medications are working, my mood, concerns about my safety or my ability to think clearly, questions I ask with the answers given, calls the clinician makes about me, calls they receive about me, their thought process as they manage my care.  I can legally obtain these notes now by asking for a copy of my full medical record, but its cumbersome, complicated, costs money, and very, very seldom done. The movement to give us access to these clinician notes through a patient portal is called, Open Notes. (for more information click here) The VA and several hospital and physician clinic systems have committed to Open Notes. A study in the Annals of Internal Medicine (click here) was done that found  Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

I receive some of my care at one of the Open Notes pioneering institutions, but I see no notes on my Patient Portal. I will ask next week when I see the specialist. I completely support the Open Notes initiative. I want access to anything about me. I do have some thoughts and questions though:
  • As a clinician myself, having read tens of thousands of notes, it’s hard work finding relevant information in those notes. Clinicians don’t all write in an informative manner. Abbreviations abound. It will be interesting to see how note writing evolves as Open Notes proliferate.
  • Can I challenge an error? This is no different than errors in my medication lists or vaccinations. I have tried to correct something in my record with no affect. This will continue to be a challenge.
  • Will clinicians continue to write about concerns with my safety and state of mind? Read more about this here.
Have you experienced Open Notes? What do you think about access to Open Notes?

Magic levers of cultural change

By Advocate, Caregiver, ePatient, Clinician, Leader, Consumer No Comments
I’m traveling these days in many bands of committed people and groups striving to improve the health journey for themselves, their loved ones, and patients in general. These bands include advocates, novice and seasoned entrepreneurs, trade associations, providers of care across the continuum; and governmental and quasi-governmental entities. Each band slogs through terrain of incredulity, frustration, anger, hopelessness, and desperation with winds of dedication, confidence, hope, and possibility at their backs.

While traveling in these many bands, I periodically step aside to rest and contemplate change – process and cultural change. What do I expect, what do I want, am I using my limited energy wisely? Frankly, I don’t expect much. Cultural change in a complex system with nonsensical incentives, without clear leaders, with so much money, and seemingly stuck in cement is a bitch. I just aspire to a little better, some of the time. I want my family and fellow travelers to get the care they need, when and where they need it. I want to have fun while traveling. My personal energy is holding up – so far so good. But is my energy being used effectively? Do I make a difference

Electronic Medical Record Design Challenge

By Advocate, Caregiver, ePatient, Consumer 2 Comments
The Office of the National Coordinator (ONC) of Health Information Technology (HIT) – part of the Department of Health and Human Services (HHS) announced the winners of the Electronic Medical Record (EMR) Design Challenge. See the winners here. The design goals included:

  1. Improve the visual layout and style of the information from the medical record
  2. Create a human-centered design that makes it easier for patient to manage their health
  3. Enable health professionals to more effectively understand and use patients’ health information
  4. Help family members and friends care for their loved ones

The categories include best overall design, best medication design, best problem/medical history, best lab summaries, and designs that challenges the judges. All amazing and artful. Take the time to at least scan the possibilities and compare to the EMR(s) you use.

I’m excited. Design is huge. These designs stretch my idea of the possible. Thank you ONC. However, I’m hesitant to get too excited. While design and format are necessary and important links in the chain for usable EMRs, they are not sufficient. The people with complex chronic diseases are heavy users of EMRs, often with multiple EMRs that don’t talk to each other (interoperability). I have info in 3 EMRs. Can these designs handle complex health issues? What is the bidirectional nature of these designs? Can e-patients and caregivers enter information and correct information? I would also like to hear more about how the winners involved patients and caregivers in the design? How will the designs adapt for non-English speakers? Will these designs help the relationship/communication with clinicians? Let’s follow this and see how these designs are implemented. Let’s look for the design backstories.

Data, information, knowledge, wisdom, action

By Advocate, Caregiver, Leader 3 Comments

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 No Comments

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, ePatient, Consumer No Comments
  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?

Magic levers in Medically Induced Trauma

By Advocate, ePatient, Clinician, Leader 2 Comments
You’re not alone, we can help. Sigh… such reassurance in those words.  Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit organization founded To Support Healing and Restore Hope to patients, families, and clinicians who have been affected by an adverse medical event or unintended outcome.

Linda Kenney, the founder of MITSS says:  In November of 1999, I found myself at the sharp end of an adverse medical event that nearly took my life. There was no acknowledgement of the emotional impact that might follow, and I certainly wasn’t prepared.  This event made me extremely aware of the lack of emotional support in place for patients, families, and care providers following these incidences.  I knew that I was very lucky to have survived and felt a personal sense of responsibility to address this hole in the healthcare system.  I made it my mission to see that the healthcare community and public were made aware of the emotional impact that exists following adverse medical events regardless of the cause.  I also became aware that the medical community is not typically set up to provide the type of support needed following the hospital stay.
Three magic levers for best health reflected at MITSS:
  1. Unintended consequences – trauma – can lead to powerful, positive outcomes for individuals, organizations, and the community
  2. Continual learning depends on open and honest communication
  3. To benefit from the whole health team, the whole health team needs support

Health Hats off to Linda Kenney and the growing family of MITSS at the start of their second decade!

Patient Centered Outcomes Research

By Advocate, Caregiver, ePatient, Leader, Consumer 5 Comments
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.

Care Coordination

By Advocate, Caregiver, ePatient, Leader No Comments
According to the September 2012 Institute of Medicine (IOM) report, Communicating with Patients on Health Care Evidence, 97 percent of those surveyed with chronic conditions agreed that their care ought to be coordinated. Yet, only 54 percent said that their care was currently coordinated. If asked is my care for MS coordinated, at first blush I’d say yes. But then I wonder how do I recognize coordinated care? Would it be that all my providers talk to each other, work off the same data set? I realize that I am the coordinator. I ask for reports from one be sent to the others. I keep each informed about what the others are recommending and prescribing. I have a great team. I am completely satisfied with their expertise, the relationships and communication with me, and my health outcomes.  My primary care doc takes her role very seriously. They all discuss options with me and seek out my personal goals and desires. They all have EMRs. Yet I am still the coordinator.  Without my active coordination my care would be fragmented and based on incomplete data sets. I don’t need more than that, because it works, and I am very stable and cognitively very present and engaged.  What if I weren’t? How would my care be coordinated?  Would my wife or sons take it over, would my primary care doc step up? Yes, they would.  Again, I’m very fortunate. I don’t see that coordinated care is the path of least resistance nationwide. It should be. How can it be?