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.
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.
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.
- PCORI’s current structure of supplying large grants to a small number of projects favors established research teams and paradigms.
- Alternative, nacient teams are less likely to receive highest scores in grant proposal requests.
- Research projects addressing partnership innovation, cultural change, social and behavioral determinants, or dissemination are likely not to be funded.
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.
- Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
- Will the treatment prescribed (any treatment) cause depression?
- Will acupuncture make a difference?
- Will all this attention to one family member negatively impact the other members?
- What do I do when my doctors disagree?
- Can we afford…
- 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
- 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
- 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.
- Dissemination of research results is last funded and least rigorous. Many results are not published. Most patients don’t read peer-reviewed journals.
- The power gradient in research favors those managing the money. Rather than researchers seeking consumer involvement, communities could control the funding and seek researchers
- 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.
- 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.