Sara Riggare

Not patient but im-patient

Tag: experiential expertise

  • Checklist and resources for meaningful engagement of patients

    Checklist and resources for meaningful engagement of patients

    This post is a followup of my recent post Why are patients the only ones around the table expected to work for free? In this new post, I have made a checklist and compiled some resources that may be useful for for patients when invited to contribute to for example research, care improvement, conferences, products, etc.

    The term “meaningful engagement” that I have used in the title comes from a WHO report that was published in 2023, and can be found under Resources further down.

    I see meaningful engagement as engagement that leads to meaningful change.

    Checklist

    First the checklist, let me set the scene:

    You have received an invitation of some sort to contribute in some way… In my experience, often the person inviting you is not entirely sure what they want your help with. They have heard, maybe from their boss, their colleagues or someone else, that it is very important to involve patients. Maybe they don’t fully understand why, and that’s OK. For me, many great collaborations have started with a very unclear beginning. The key factor is if the person contacting you have the right mindset and the only way to establish that is by interacting with them. It can take some time but my experience is that it is worth investing that time early on instead of encountering difficult issues later in the process.

    I hope the checklist below can help you. Use it to quickly assess whether the invitation treats you as a knowledge contributor or as free labor.

    1) Clarify the role

    2) Clarify the expectations

    • How many meetings? How long?
    • What preparation is expected?
    • Will I be asked to read materials in advance?
    • Are follow-ups or written feedback expected?

    If preparation is required → this is work.

    3) Ask directly about compensation

    • Is there an honorarium or hourly compensation?
    • Are preparation time and meeting time both compensated?
    • Are travel time and expenses covered?

    If the answers are vague, that’s a signal.

    4) Watch for “replacement compensations”

    Be alert if you hear:

    • “You’ll get visibility / contacts”
    • “You can use our system/app for free”
    • “Others do this voluntarily”
    • “There is no budget”
    • “It’s complicated administratively”

    These are red flags, not benefits. For common arguments and counterarguments, see this post.

    5) Check how professionals are treated

    • Are the researchers/organizers/project team members doing this during paid work hours?
    • Are speakers, consultants, or moderators paid?

    If yes → the principle should apply to you.

    6) Ask how your input will be used

    • How will my contribution be documented?
    • Will I receive feedback on how it influenced the project?
    • Is this advisory or actually consequential?

    Vague answers often mean symbolic involvement.

    7) Consider accessibility and fairness

    • Would someone without financial flexibility be able to say yes to this?
    • If not, the setup is structurally excluding many patients.

    8) Ask for it in writing

    • Role description
    • Time expectations
    • Compensation terms
    • Reimbursement of expenses

    If it feels uncomfortable for them to write it down, that’s informative.

    9) Decide your boundary

    You can say:

    “I’m happy to contribute, but I don’t do this type of work without compensation.”

    This is not rude. It is professional.

    10) Remember

    You were invited because of what you know.
    That knowledge has value.

    Resources

    Below, I have listed some resources that support meaningful engagement.

    WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions

    Link to document

    Highlights:

    • Target audience: Member States and other stakeholders
    • “The overall objective of the framework is to support WHO and Members States in meaningful engagement of people living with NCDs, and mental health and neurological conditions to co-create and enhance related policies, programmes and services.”
    • Practical advice and recommendations
      • 4. Principles of meaningful engagement
      • 5.1 Sustainable financing. Meaningful engagement should be supported by sustainable financing for all engagements with individuals with lived experience remunerated at a rate equivalent to that for technical experts.
    • Conclusions:
      • A lot of work still remains
      • The way forward lies in collaboration

    WHO Guidance for best practices for clinical trials

    Link to document

    Highlights:

    • Target audience: Everybody working on clinical trials
    • “strengthening clinical trials to provide high-quality evidence on health interventions and to improve research quality and coordination to identify and propose best practices and other measures to strengthen the global clinical trial ecosystem and to review existing guidance and develop new guidance as needed on best practices for clinical trials.”
    • Main focus is RCTs
    • Emphasizes meaningful engagement:
      • 2.2 Good clinical trials respect the rights and well-being of participants
      • 2.3.1 Working in partnership with people and communities
      • 3.2.1 Patient and community engagement

    Update to the Declaration of Helsinki

    I have also written a blog post on the update to the Declaration of Helsinki, the post is in Swedish, use your favorite translator to read it: Link to post

  • Why are patients the only ones around the table expected to work for free?

    Why are patients the only ones around the table expected to work for free?

    (Detta inlägg finns även på svenska: LÄNK)

    (This post is complemented with a checklist: LINK)

    I have been part of literally hundreds of conversations and meetings with researchers, healthcare professionals, companies, agencies, conference organizers and others wanting to involve patients. Here, I have listed 12 arguments that I have heard when asking if the offer comes with some form of payment (plus one bonus argument, which I think is the true reason that patients are often expected to work for free)

    First, let’s make sure that we’re talking about the same thing:

    Primary or secondary patient involvement?

    When I teach or present on patient involvement, I always spend some time at the start to ensure that we all agree on what we’re talking about. If the topic is how to engage patients in participating in research studies or clinical trials, I refer to it as primary patient engagement. For conversations on getting patient input on the structure and/or process of studies or trials to improve them for upcoming participants, I use the term secondary patient engagement. I have written about this before => link to post.

    Many regulatory bodies, research funders, governmental authorities and others all around the world are increasingly promoting, encouraging, and even demanding secondary patient engagement for applications and projects. And that is what this post is about: secondary patient engagement.

    I want to point out that the same principles apply to engaging patients to help improving healthcare processes or facilities, medtech products, evaluating research applications, speaking at conferences etc.

    Here we go, 12 arguments I’ve heard on why not to pay patients:

    (edit: now with five additional arguments, based on comments and feedback, between reasons 12 and 13)

    Reason 1: “This is voluntary engagement, not work”

    Imagine a project meeting where a researcher, a clinician, a project manager—and a patient—are all invited to help improve a study design. The meeting has an agenda, background material is sent out in advance, and everyone is expected to read it, think it through, and contribute informed input.

    The researcher, clinician, and project manager are all attending as part of their paid workday. The patient is described as “volunteering.”

    Yet the expectations are the same: show up on time, be prepared, share expertise, and help shape decisions the project depends on. The only real difference is how the contribution is labeled—and whether it is compensated.

    How can this argument be met?

    Counterarguments

    • The tasks are defined, scheduled, and requested by the organization → this is work.
    • Volunteering is initiated by the individual. Here, the system initiates.
    • This is organized knowledge work, not volunteering.

    Reason 2: “Compensation threatens independence”

    Imagine the same meeting where everyone is paid for their time—except the patient, who is told that payment might make their input less independent. The implication is that being unpaid makes their perspective more trustworthy. Strangely enough though, the paid professionals’ independence is never questioned.

    Counterarguments

    • Everyone else in the room is paid without their independence being questioned.
    • Transparency about compensation increases credibility.
    • Independence is secured by transparency, not by lack of payment.

    Reason 3: “But researchers (doctors, nurses, etc) do this (review funding applications, sit on advisory boards, present at conferences, etc) without payment”

    No, they don’t. This argument overlooks that these activities usually take place within paid employment, during salaried work hours, and contribute to professional merit, networks, and career progression. What appears as “unpaid” is in fact embedded in a system where time, status, and long-term benefit are already compensated. Patients, in contrast, are expected to contribute outside any such structure.

    Counterarguments

    • For professionals, this work happens within paid roles and paid time; for patients, it does not.
    • These activities build careers and merit for professionals—patients receive no equivalent benefit.
    • What looks unpaid for staff is still supported by salary, status, and infrastructure; patients stand outside all three.

    Reason 4: “There’s no budget for paying patients”

    Another type of argument relates to financial aspects. It is often said that compensation simply wasn’t planned for, as if budgets were fixed facts rather than reflections of priorities. Yet the same project easily finds funds for venues, catering, consultants, and staff time—which simply means that the real issue is not lack of money. It’s about what the organization sees as important.

    Counterarguments

    • Budget reflects priorities, not constraints of nature.
    • The same budgets accommodate consultants and communication activities.
    • If it is not in the budget, it is because it was deprioritized.

    Reason 5: “It’s so administratively complicated”

    This argument points to practical hurdles—tax forms, payment systems, insurance, procurement rules—as if these were insurmountable barriers. But the very same administrative machinery routinely handles fees for consultants, speakers, and external experts. What it reveals is not true complexity, but that the system was never designed with patients in mind as formal contributors.

    Counterarguments

    • The system already manages consultant fees and honoraria.
    • “Complicated” means the organization has not adapted to patients as contributors.
    • Administrative systems should adapt to reality, not the other way around.

    Reason 6: “We don’t want to create ‘professional patients’”

    This argument reflects a concern that some patients might become too experienced, too familiar with research and healthcare processes, and therefore somehow less “authentic.” The strange thing is that in every other context, growing competence and repeated involvement are seen as assets that improve quality. What is framed as a risk here is, in practice, the very process by which expertise is developed.

    Counterarguments

    • What is being described is competence development.
    • We do not question “professional researchers”.
    • Competent patients are an asset, not a threat.

    Reason 7: “We are giving patients a chance to contribute to research / future patients / their own community”

    This frames participation as a gift to the patient rather than a contribution to the project. It suggests that the opportunity to be involved is itself a form of compensation, shifting attention away from the value the patient adds. In doing so, requested work is seen as a favor granted, rather than expertise sought.

    Counterarguments

    • Being invited is not compensation when real work and expertise are requested.
    • Calling it a “chance to contribute” reframes sought-after expertise as a favor instead of a contribution.
    • It is frankly unethical to try to shame patients, who often are struggling with illness, worry and financial hardship, into contributing for free.

    Reason 8: “Patients benefit from participating”

    This is an especially infuriating argument, that patients should not be paid because they get benefit from their contributions in the form of strengthening of health and motivation. This argument suggests that any personal health gains a patient might experience from being involved somehow replace the need for compensation. It implies that improved understanding, empowerment, or a sense of purpose is “payment enough.” By that logic, however, no one whose work is meaningful, educational, or professionally rewarding would ever need a salary.

    Counterarguments

    • Researchers also benefit personally from salary and career advancement. So, by the same logic, they should also not get paid.
    • Personal benefit does not negate that something is work.
    • Self-interest does not disqualify work—otherwise no one would be paid.

    Reason 9: “Compensation could attract the ‘wrong kind of patients’”

    This argument assumes that financial motivation makes participation less genuine, as if only those who can afford to contribute for free are the “right” voices. In practice, it means that unpaid involvement filters out anyone without spare time or financial flexibility. Rather than protecting quality, it quietly ensures that only the most privileged patients are able to take part.

    Counterarguments

    • This argument is never applied to professionals.
    • Compensation enables participation from those who otherwise cannot afford it.
    • Without compensation, you only recruit the economically privileged.

    Reason 10: “Patients don’t know enough about what we do for us to pay them”

    This argument suggests that patients lack the technical understanding required to warrant compensation, as if payment were reserved only for formal expertise. Yet patients are invited precisely because they bring a different kind of knowledge—about living with a condition, navigating care, and seeing gaps professionals may overlook. Dismissing this as insufficient knowledge overlooks the very reason they were asked to contribute in the first place.

    Counterarguments

    • Patients are invited for what they know that professionals don’t—not for what they lack.
    • You’re compensating contribution and time, not academic credentials.
    • If their knowledge isn’t valuable, they shouldn’t be in the room in the first place.

    Reason 11: “We’ve never paid patients before”

    This argument rests on tradition: it has always been done this way, so it feels natural to keep doing it. But history mostly tells us how things used to work—not whether they still make sense. Many of the improvements in patient involvement have come from challenging exactly these old routines.

    Counterarguments

    • Tradition is not an argument in knowledge development.
    • Patient involvement as a field exists precisely to change past practice.
    • Historical practice is the reason patient knowledge has been underused.

    Reason 12: “Not all patients want to get paid” or “Not all patients are able to accept payment”

    This argument points out that some patients prefer to contribute without compensation, or may be restricted by benefit rules or employment status. While this may certainly be true for some individuals, it turns a personal choice into a general rule for everyone. The fact that a few people are willing—or forced—to work for free does not mean that unpaid work should be the norm.

    Counterarguments

    • Individual preference should not define the norm for everyone else.
    • The option to decline payment is fair; the absence of payment is not.
    • Basing the system on who can afford to work for free excludes those who can’t.

    These additional reasons have been added as a result of comments and feedback:

    Additional reason 1: “We can’t pay you, but you’ll get great connections by speaking at our conference”

    This frames visibility and networking as a substitute for compensation. It assumes that exposure, contacts, or prestige are adequate payment for preparation time, travel, and sharing expertise. In practice, it mirrors a pattern where patients are expected to trade real work for intangible benefits that primarily serve the organizer.

    Counterarguments

    • Exposure and networking do not replace compensation for time and expertise.
    • Professionals invited to speak are rarely asked to accept “connections” instead of payment.
    • If the talk creates value for the conference, it deserves proper compensation

    Additional reason 2: “We can’t pay you, but you can use our app/AI bot/system for free”

    This argument reframes access to a product or service as a form of compensation. It treats the patient’s time and expertise as something that can be exchanged for exposure, testing access, or early use of a tool. In reality, this shifts the relationship from collaboration to unpaid product testing, where the patient’s contribution creates value for the company or project without any financial recognition.

    Counterarguments

    • Access to a product is not compensation for professional input and time.
    • This turns patient involvement into unpaid user testing.
    • If the tool has real value, it should be offered in addition to fair compensation—not instead of it.

    Additional reason 3: “We can’t pay you, but why don’t you fundraise to cover your own costs and then contribute for free?”

    This argument asks the patient to take on the financial responsibility for enabling their own participation, while everyone else is paid from the project’s budget. It turns involvement into a personal funding problem and shifts the burden of resourcing the project onto the very person whose knowledge is being requested.

    Counterarguments

    • Asking someone to fundraise to work for free reverses who is responsible for resourcing the project.
    • No other contributor is expected to secure their own funding to be allowed to participate.
    • If the contribution is important enough to ask for, it is important enough to budget for.

    Additional reason 4: “We’d love to pay you – but how?” (followed by silence)

    This starts as apparent goodwill: praise for your contribution and an expressed intention to compensate you. You provide the requested invoice or details—and then nothing happens. Months pass. A year later, you’re warmly invited back because your previous input was “so valuable,” while the earlier payment is still unresolved.

    Counterarguments

    • Good intentions without follow-through are functionally the same as not paying.
    • If an organization can manage contracts and payments for others, it can do the same for patients.
    • Unpaid past work should be resolved before new involvement is requested.

    Additional reason 5: “If you won’t do it, we will find someone else who will”

    This argument relies on the fact that some patients, out of goodwill, passion, or necessity, are still willing to contribute for free. It shifts the focus from fairness to replaceability, implying that the issue is not the value of the contribution but the willingness of someone to accept unpaid work.

    Counterarguments

    • The availability of unpaid contributors does not make unpaid work ethical.
    • Replaceability does not reduce the value of the contribution.
    • This approach selects for who can afford to work for free, not for who is best suited to contribute.

    Reason 13: The unspoken underlying argument

    The real, unspoken argument is probably:

    “If we start paying patients, we acknowledge that their knowledge is work. And that challenges the existing knowledge hierarchy”

    This is not about money. It is about epistemic status.

    Counterarguments

    • Yes — that is the point.
    • If patients contribute to knowledge production, they are knowledge actors.
    • Compensation is an organizational recognition of this.

    This is about how we view knowledge, not about money.

    Here is an argument that can be used to close:

    Either this is a real contribution to research and healthcare improvement — and should be compensated.
    Or it is symbolic participation — and we should be honest about that.

    Which ones have you heard? Have you heard any other arguments for not paying patients? Let me know in the comments.

  • Managing medication in PD – both complex and simple?

    Managing medication in PD – both complex and simple?

    Medication management is probably the absolutely most important part of my Parkinson’s disease (PD) selfcare since without my pills, my body would not function. During the day I take meds approximately every three hours to be able to move around, take care of myself and be able to work. When I wake up in the morning, I have not taken any meds for at least 7 hours and my movements are REALLY slow and stiff.

    My approach to PD is that I try to take my meds at the same times every day. I know that other persons with Parkinson’s (PwP) have other approaches and no-one really knows which approach is best, since there has been no research conducted (or at least not published) comparing different approaches (which is actually one of my main reasons for writing this post).

    When I occasionally make changes to my medication regime, I note down dates of the change and what I changed (for example types of meds added/taken away, changes in timings for intakes, and/or changes in combinations of meds for each intake). For example, a few months ago I noticed that I tended to get slightly dyskinetic (a side effect of PD meds, see here) around lunch so I decided to push my second dose of meds 30 minutes and started taking it at 10:00 am instead of 9:30 am. This changed resolved my dyskinesia. These notes are for myself, none of my neurologists have ever asked about changes I have made between visits, they have only shown an interest in my current regimen at the time of the visit. I can completely understand this, they have enough work to do as it is and don’t need more tasks to complete. Of course there is plenty that could be learned from systematically recording individual medication regimes for a large number of persons with Parkinson’s (PwP) including following up the effects of that regimen on an individual level but I have long since accepted that that is probably not the best use of healthcare resources.

    In my role as an academic researcher, I have applied for funding many times over the past decade to address different aspects of how to optimise PD meds on an individual level. Unfortunately my funding applications have not really succeeded despite the fact that this area is extremely under-researched. I think there are several reasons for this apparent disinterest in the field of medication optimisation in PD and I will mention the three at the top of my mind:

    1. Complexity

    PD is SUPER COMPLEX! We have heard this so many times but what does it actually mean? The complexity of PD is multi-layered and there is so much we currently don’t know. We don’t know how and why the condition starts on an individual level, we are not sure about what processes makes the condition progress, and we don’t know why some medications work well for some but do not work as well for others.

    On the level of individual neurologists, I think that many of the clinicians who have made it their profession to help us actually think that medication intakes are already optimized based on available guidelines and their clinical experience. Those guidelines are however based on group-level data, and do not often translate well to individual patients. There is a huge gap between what is measured in research trials (which subsequently forms the basis of guidelines) and what PwP experience in their daily lives.

    One aspect that is often overlooked is that taking medication is not as simple as just swallowing a pill at the right time. It requires remembering (which, ironically, can be difficult when you have a neurodegenerative disease), carrying medication with you at all times, for some PwP also planning around meals, and adjusting for unpredictable factors such as stress, sleep quality, and physical activity. Even something as basic as getting water to take a pill can be a challenge in certain situations. The effort required to consistently take PD medication is far greater than many neurologists or researchers realize.

    Another factor adding to the complexity is that we living with PD are not really interested in taking the pills, we actually have zero interest in the actual pill taking itself. The reason we take them is to get the effect the pills (hopefully) have on reducing our symptoms. But what does healthcare use to evaluate this process? They use medication adherence, meaning if we take our pills in the way our neurologists have prescribed. As far as I know, there are no standardized adherence scales available that take into account the complexity of finding your individual best timings for intakes of meds to achieve the optimal effect.

    And since this complexity doesn’t directly influence the work of neurologists and researchers, it’s not strange that they don’t see the need for research into how to best optimize PD meds.

    2. Money

    The reality is that the use (and non-use) of pharmaceuticals is (almost) entirely driven by money. And currently there is no money to be gained on a corporate level from helping the approximately 10 million PwP in the world getting a better effect from the many pills we take.

    The pharmaceutical industry mostly hinges on developing new drugs, not on optimizing the use of existing ones. This means that the funding available for research favor the discovery of new molecules over the fine-tuning of treatment regimens for individual patients.

    3. Simplicity

    As a person who has spent more time thinking about this A LOT over the past 10 – 15 years, probably more than is healthy…, I have come to the conclusion that the main problem with the issue of medication optimization in PD actually is simplicity. More precisely, the illusion of simplicity. Medication adherence and effectiveness in PD are mostly treated as simple, binary issues: “Did you take your medication? Yes or no?” But in reality, it’s much more complex. Timing, food intake, stress levels, sleep quality, and countless other factors can influence how well our meds works.

    Yet, our healthcare system is not set up to systematically track and adjust for these variables. Instead, PwP are mostly left to figure it out themselves, with trial and error as our primary tool.This means that many PwP, myself included, spend years fine-tuning our medication regimens without structured support. Some of us get lucky and find a pattern that works well; others struggle for years with inconsistent results.

    In conclusion

    For this area to develop, we need a better understanding of how PwP actually take their medication in daily life and not just how they are prescribed to take it. We need more research that focuses on the real-world challenges of medication adherence, from remembering doses to managing side effects and adjusting for the unpredictability of daily life with PD. We need a more nuanced discussion of what is working, what isn’t, and why. Until then, PwP will continue doing what we have always done: adapting, experimenting, and trying to make the best of an imperfect system.

    It’s ironic that while Parkinson’s medication is one of the most researched aspects of the disease, the actual experience of taking it—the daily struggles, the trial and error, the constant balancing act—is still largely unstudied. The truth is, many PwP are experts in managing their own meds out of necessity, yet our knowledge remains anecdotal and undervalued in clinical settings. If we truly want to improve Parkinson’s care, we need to start acknowledging the experiential expertise of us who live with it every single day.

    And no, there is nothing simple about managing PD meds – it’s complex all the way!

  • Understanding Parkinson’s: The curse of knowledge

    Understanding Parkinson’s: The curse of knowledge

    I just realised that I have probably been suffering from the “curse of knowledge” when trying to explain Parkinson’s (PD) to people. With this I mean that things that are obvious to me are probably not as obvious to others when it comes to understanding Parkinson’s. Let me demonstrate with a few examples:

    Biomarkers in Parkinson’s

    I often say that there are no biomarkers in PD but if you read the scientific literature there are many examples. What’s up with that? The problem is that none of them are fully deterministic. With that I mean that none of them are relevant for all people with PD. Many different attempts at biomarkers are used in projects on PD and one example REM-sleep behaviour disorder or RBD. This condition entails people not lying still while sleeping but rather can thrash about in bed and if someone is sleeping next to them the spouse or partner might even get hurt. This is considered one of the early markers of PD in the scientific community but I would say that its usefulness to patients is limited. This is because not all people with RBD will go on to be diagnosed with PD and conversely not all people with PD will ever experience RBD. There are also other suggested prodromal signs like depression, loss of sense of smell etc. They are all equally non-deterministic as RBD and without clear patterns in co-occurences between different individuals who go on to be diagnosed with PD (or not).

    Diagnosis of PD

    Also here there are important challenges. The condition is generally diagnosed based on observations of a few key symptoms:

    • Tremor. Not all PwP have this.
    • Slowness of movement (bradykinesia). I would say that all PwP have this symptom but there are MANY other conditions that also give this symptom
    • Stiffness (rigidity). Most PwP have this symptom in varying degrees but it can be difficult to distinguish from other conditions that result in stiffness.

    Comparison with type 1 diabetes

    Let me make a comparison with a different complex chronic condition: type 1 diabetes (T1d). There is a very distinctive and specific biomarker in blood glucose levels. All people with T1d need insulin to survive and they all use frequent blood sugar readings to regulate their treatment. 

    In short: both Parkinson’s and T1d are equal to being dealt a really shitty hand in the “poker game of life”. But while with T1d you get the two of clubs, seven of hearts, king of spades, ten of diamonds, and five of spades, with Parkinson’s your hand consists of an old bus ticket, a wrinkled up candy wrapper, your old business card from two re-organisations ago, a receipt from your latest visit to the pharmacy, and small piece of pocket lint…

  • This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

    This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

    (This blog post is also available in Swedish =>> here)

    Most people living with Parkinson’s disease take a lot of pills, multiple times a day. After having Parkinson’s for a while, it’s not uncommon to be prescribed 3-4 different types of medications to be taken in various combinations 4-6 times each day. One of my medications is an extended-release type, which means that the pill slowly dissolves in the body, and therefore, at least in theory, it’s sufficient to take it only once a day. When I started taking that medication, I did exactly that, took it once every day, in the morning. After the usual “adjustment problems” such as a bit of nausea and similar issues for a few weeks, I felt confident that the addition of this medication did indeed make it a bit easier for me to move around.

    After some time however, I noticed that the positive effect was noticeable in the morning but the pill didn’t give me as much of an effect later in the afternoon. During my next neurologist visit, I mentioned this to him. I knew that the same medication was available also in other dosage strengths so I asked him if maybe he could prescribe it to me in a lower strength so that I could spread out my intakes of the extended-release formulation over the day. In this way, I could take lower doses at several different times instead of taking only one higher dose tablet in the morning. He considered this for a few seconds and said: “According to the information from the pharmaceutical company, it really should be enough to take this medication only once a day, and it does seems inconvenient to take it at multiple times. But if you really want to, you can try.” I left the clinic with a new prescription and was curious to see how this new dosing would work out.

    Classification of patient knowledge by source of learning. (From: Dumez, V., & L’Espérance, A. (2024). Beyond experiential knowledge: A classification of patient knowledge. Social Theory & Health.)

    It should come as no surprise that I strongly believe that the improvement of healthcare should be done together with patients, and I recently came across a scientific article that made me see patient involvement in a completely new light: “Beyond experiential knowledge: a classification of patient knowledge” written by Vincent Dumez and Audrey L’Espérance. They identify six types of patient knowledge from three main sources of patient learning, see the Figure. You can read a separate post about that article here, and most important is that Dumez and L’Espérance made me aware of the concept of patients’ experiential knowledge. I also went through that article’s reference list (a good way to find other relevant scientific articles in a particular field) and found a very interesting article published back in 1976: “Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups” written by Thomasina Borkman. There, experiential knowledge is described as “first-hand knowledge,” meaning knowledge obtained from personal experience with a phenomenon, as opposed to knowledge that comes from reasoning, observation, or reflection based on information provided by someone else. I have written a separate post also for this article (link here).

    So what? Why is this important?

    What does this mean then? In what way do these two scientific articles relate to patient involvement? This is my take: Through their education and professional work, healthcare professionals have acquired theoretical knowledge. They have also gained experiential knowledge through their professional practice. Of course, both of these aspects are very important when you want to improve and further develop healthcare. And if you live 24/7 with illness, disabilities, and the need for help and support from healthcare and society, AKA patients, you gain experiential knowledge. That kind of knowledge cannot be gained theoretically. You cannot get experiential knowledge from reading a textbook or a scientific article, it can only be acquired through living it.

    This means that without also having direct access to patients’ experiential knowledge, healthcare professionals do not have the full picture and therefore cannot solve the problem at hand: to optimize individual health, in the best way.

    Finally

    You might wonder what happened when I started taking the extended-release medication several times a day instead of just once every day. Well, as usual when making medication changes, there were some initial adjustment issues when I went from a higher dose once a day to several lower doses. After that, it became very clear to me that this way of using the medication gave me a noticeably more consistent effect. I shared this with my neurologist, and later I heard from other people with Parkinson’s who also go to him that he started prescribing this extended-release tablet in the same way to other patients as well.

    In conclusion: involving patients in improving and further developing healthcare is important because it ensures that healthcare is based on the actual priorities that patients have, rather than the priorities that healthcare professionals think that patients have.

  • Patients’ experiential knowledge and expertise

    Patients’ experiential knowledge and expertise

    I recently came across a very interesting scientific article, published almost 50 years ago, with concepts that are definitely still relevant and important today:

    Borkman, T. (1976). Experiential Knowledge:
    A New Concept for the Analysis of Self-Help Groups. 
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