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Jan 02 2013
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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.
Dec 18 2012
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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?
Dec 02 2012
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Magic levers in Medically Induced Trauma

By Advocate, Clinician, ePatient, Leader
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!

Oct 29 2012
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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.
Oct 24 2012
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Care Coordination

By Advocate, Caregiver, ePatient, Leader
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?
Sep 29 2012
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Consumer Engagement – Respect the Horse

By Advocate, Consumer, ePatient, Leader
I went to the Duke Wireless Health Conference (See #dukewhc for the tweet thread) in North Carolina this week invited by my friend Dr. Gopal Chopra of Ping MD fame. How to engage consumers more in their health care? As a patient, I bristled at the thought that I wasn’t  engaged in my care. They don’t know me? I understand that I’m not representative of all consumers – no one is. We are all health care consumers, we are all on a health journey. There is much variation in those journeys. I also understand that other members of my health team – my primary care doc, my wife, my kids, my mother have opinions or perspectives about how engaged I am in my healthcare. I gained weight for several years. They suggested I lose weight. It wasn’t until this past year that I engaged in losing weight and lost 35 pounds. Two points: First I’m always on my health journey. The journey just happens. Second, my ability to focus on various aspects of that journey and engage in trying to change that journey ebbs and flows. Sometimes I focus on some of the seriously annoying aspects of MS: vision, mobility, balance. Sometimes, I need a rest from it all. can’t focus at all. I appreciate being accepted by my health team as I am. I appreciate that they care about me and listen to me actively. I appreciate their support when I’m ready to tackle a particular challenge, like weight loss. Ah, there it is – a team present when ready. Hold that thought.

We have a primal conundrum – the tension between population health and individual health. The community, the industry wants the population healthier. Makes sense: it’s the right thing, it costs the community less overall, and it feeds the economy. The tension comes when individuals feel that the community knows best – how do we get the horse to drink? Do we respect the horse? How do we align these forces? Treatments, products and tools are designed for populations (its a matter of scale), but used by individuals. My takeaways from the conference are: bring products and tools to where people are (Screening kiosks in Walmarts by SoloHealth); reconnect families to reunite health teams (Family Health Networks); allow more time for caring providers to engage with their patients; engagement is not about technology – technology serves the engagement and the relationships.
Sep 26 2012
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Advocacy – Health Partners

By Advocate, Caregiver, Clinician, Consumer, ePatient
I’ve participated in several lively discussions about patient advocacy in the past weeks –  at the Boston Healthca.mp #hcbos, on the Society for Participatory Medicine (#S4PM) list and with Kelley Connor of Real Women on Health fame. Advocacy has two overlapping worlds – individual advocacy and policy advocacy.  I will muse here about individual advocacy in acute care. An advocate is a guide, champion, companion – health partner. So challenging for the acutely ill person to be effective as their own advocate. One of my sons went to Africa as a development aide worker. When I invited to engage on health with his team as they prepared for their adventure, I suggested that they identify a health partner among their team. Several months into their experience, we hadn’t heard from him in some time. Then we received a letter, Hi, I’m your son’s health partner. He contracted malaria… OMG. Health partners are those who know the patient and can focus on logistics, relationships, communication/information, and patient comfort. Vigilance about the mundane important things comes first: a good team, hand washing, pain management, and mobility. Next its access to information and setting goals or milestones. What has to happen before the patient can be discharged? Pain management, activity level, self care in the hospital, a safe place to go upon discharge. If the acute care is elective, its scouting out the official communication routes: who’s the charge nurse, where’s the patient relations office, will you be communicating with a hospitalist, an attending, a resident, or a student?  Who’s in charge of the overall care for this episode? Charles Inlander’s book, Take This Book to the Hospital with You gave voice to my early nursing career observations that the health journey was a risky place.  I had realized that my role as a nurse to be a patient advocate was valuable and necessary, but insufficient. Acting as an advocate for a son when he had cancer, I didn’t know as much as I thought about what he wanted and how I could be of help and not get in his way. We had many discussions together and as an immediate family about death and dying, about treatment options, about communication with extended family. So challenging to integrate my perspectives, emotions, fears and put his first. Thankfully, it wasn’t just me in that role. We had an advocacy team – my wife, other sons and their partners, his girlfriend and her parents. We did pretty well. As a nurse I’ve been challenged by advocates. It’s been rare that the advocate was clearly identified. More often the tension between family members muddied the water. For end of life issues, advanced directives and durable power of attorney helps clarify, but most acute care episodes are not end of life.

I’ve embraced and learned about health partners as a patient, caregiver, nurse, and leader. I’ve had cyclical conversations with any family I might serve as a health partner, especially my mother and my wife. With my mother it took 15 years to arrive at comfort with the discussion. My sister-in-law, a nurse, was the best I’ve ever seen identifying and supporting health partners with her patients. She brazenly and tenderly included it as part of her routine first assessment of every patient she cared for and then included them in the routine care.
Then there’s private, professional advocates – almost 350 of them members of AdvoConnection.  What are your thoughts about health partners?