Patient and public involvement in covid-19 policy makingBMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m2575 (Published 01 July 2020) Cite this as: BMJ 2020;370:m2575
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
This is a very important piece highlighting the lack of shared decision making and patient involvement during the covid-19 pandemic. The impact for patients, who have had no choice but to interact with health services during this time, has been profound on the level of care delivered.
As I have Type 1 diabetes, being admitted to hospital always strikes me with fear. I worry that my diabetes management and control will be taken away from me. Being an inpatient during the covid-19 pandemic however was even more concerning. Having all of the same concerns as usual, plus the added worry of infection and stretched services.
When the UK lock down was announced I was also 8 months pregnant. I had spent the last couple of months creating a detailed plan for my diabetes management during my stay in hospital. This included ensuring my diabetes was well managed through the induction process, agreeing on when I would be able to self-manage my diabetes and when my healthcare team should take over. I felt supported and that my preferences were being taken into consideration, making me feel much more at ease for my stay.
Going into hospital for my induction I knew that the hospital would feel very different to normal, but I had not imagined that this meant all my shared decision making and plans would be disregarded. My plan detailed the importance of me needing to have as much information as possible about food type and timing to help me manage my diabetes. None of this was communicated which then resulted in me having a very high blood sugar during the induction. This was potentially very dangerous both for me and my baby. We were told that a c section would have to happen due to my unstable blood sugars. I had to explain the reasons why to the healthcare team. Luckily, they listened and understood but all of the work we had put into the plan seemed wasted.
During my stay, health professionals spent as little time with us as possible. They would only come in the room to do the tests they needed. There was no discussion on how they could help manage my diabetes other than a ‘what is your blood sugar level?’ through a slightly opened door. I would try to ask questions whilst they were doing tests which they often answered as briefly as possible whilst rushing out of the door. I understand that there may have been a fear of being close to patients, but I wish they would have shared this. I felt alone and found the first few days managing my diabetes, a new baby, and difficulties in feeding very challenging.
I felt so disappointed that all our planning was cast aside. I felt like my care was being completely dictated by my healthcare team, rather than my wants or preferences. I understood that things in hospital would be different, but I never imagined we would feel completely cut off from all decision making.
Becoming new parents during the pandemic has meant we have missed out on so much, but our relationship and trust with health professionals has also been greatly affected. Since the birth we have only received a letter from our health visitor to say they will be in touch, at some point. I can only hope that patients will now be involved in the planning for how health services will now pick up these families with new additions.
Competing interests: No competing interests
We share concerns with Tessa Richards regarding the potential loss of shared decision-making in health systems. COVID-19 has profoundly influenced the delivery of primary care. Many GPs have fallen back on doctor-centred primary care during the initial surge of the pandemic. The step change in e-consults  and a huge swing towards telephone triage offer tempting efficiencies to manage workload in primary care, but we risk losing the patient focus that we all believe in.
Martin Marshall (RCGP chair) feels that we should seize the post-COVID opportunity to offer patients choices and to improve shared decision-making (SDM) . We offer some experience, including from two practices rated “outstanding” by CQC, of how shared decision-making can be achieved, even in the context of the new normal of general practice. We offer a way to do this in a sustainable way that does not impact negatively on clinician time.
Questions about how to make shared decision-making “normal” in routine practice persist. These questions are particularly about the lack of time in consultations and about how to better prepare patients to share decisions. We offer innovative and achievable solutions to these questions. The nub of this is to take the information and option-sharing stages outside of the clinical encounter.
Despite extensive research and other efforts [3-9] we have not been achieving enough shared decision-making in routine practice . Shared decision-making produces better informed patients, improved clinical outcomes and potentially more equitable use of healthcare resources . Meaningful shared decision-making also enhances the patient experience and could drive improvements in effectiveness and safety . In 2004, the UK general practitioner contract placed clinical responsibility firmly into the court of primary care providers. This view is now shifting . We are being challenged to rethink the doctor-patient relationship and deliver more patient-centred care. This is still the case, even in the COVID / post-COVID context, but we need to think even more urgently and carefully about what this would look like. Patients should be given more responsibility [14,15]. So, what are the barriers preventing this change ? Lack of time is usually cited  without supporting evidence. And how do we enable patients to take more responsibility for their healthcare decisions?
Rethinking Medicine  (England), Realistic Medicine  (Scotland) and Prudent Healthcare  (Wales) seek to get best value from our finite healthcare resources. The international Choosing Wisely campaign  focused on avoiding unnecessary medical tests, treatments and procedures. It now advocates for “better conversations” between patients and clinicians through shared decision-making. This seeks for patients to make decisions that are “consistent with their values” – decisions that match “what is important to them”. Patients are encouraged to ask: What are my priorities? What are the benefits? What are the risks? What are the alternatives? What happens if I do nothing?
So what does this look like in practice? Researchers have developed a readily accessible model for clinicians, incorporating four phases: preparation, choices, options and planning . The model is based on work pioneered in the United Kingdom by the MAGIC programme .
Patients will naturally be reluctant to return to the old normal of travelling/parking to attend non-urgent appointments and waiting in crowded spaces. We suggest changing where the options are shared. We believe that management options can be effectively shared away from the clinician’s consulting room. An example is Realgeneralpractice.org – an open source platform that facilitates sharing of options with patients and with clinicians. It facilitates decisions that work for patients. It provides people with accessible evidence-based information about management options, to enable them to be more fully engaged in their own decisions. People consider “what is most important to them” before making the decision with their clinicians [24,25,26]. Half of the materials are audio, thus accessible to both patients and clinicians [26,27].
Using trusted online resources, shared decision-making can happen in three practical and time-efficient stages:
Stage one: Initial consultation - Preparation and choices. The patient’s background and prior preferences are elicited. Vital clues about the options that might suit the patient are identified. The clinician generates a short-list of viable choices, adding to the patient’s previous awareness. The patient is signposted to the relevant shared decision aids, including audios and pros and cons tables that summarise the options.
Stage two: Options. The patient reviews the suggested options in their own time and at their own pace, discussing with family or others as desired. Stage two usually takes place outside the consulting room.
Stage three: Planning. The patient books a further (usually short, telephone) consultation during which a shared decision is made.
We emphasise that at its heart, shared decision-making is based on positive attitudes and skills. Decision aids or ‘tools’ are not essential  but they can help. The innovation from examples such as realgeneralpractice.org is in providing patients with information about the options, in a format that enables patient engagement and in a manner that is minimally disruptive, practical and cost-effective regarding clinician and patient time [29,30].
COVID-19 gives us the opportunity to change primary care for the better. Our approach to shared decision-making is holistic, with patients at the heart of every decision. Patients decide what treatments are right for them with clinician support. This approach is sustainable and achievable, via remote consultations, or via traditional 10 minute face-to-face consultations. The key is that the patient is invited to access material outside the consulting room, either before, or after their appointment. E-consults offer the opportunity to include web-links or to attach material directly from a shared decision-making resource for patients to review. This already happens in other health systems using primarily electronic communications . Remote technologies can make shared decision-making real for patients and busy clinicians. People still trust their own GPs to help them to navigate a course that is personal to them. Patient-centred COVID-19 policy making needs to keep the best of the old but to seize the opportunities of redesigning the way health care is provided.
1. Personal communication from e consult Marketing and Communication Manager
2. BMJ podcast - Interview with Martin Marshall, Resetting General Practice, 17 July 2020
3. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10): 1361-7.
4. Charles C1, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997 Mar;44(5):681-92.
5. Shared decision making in health care: achieving evidence based patient choice, 3rd edition. Editors: Glyn Elwyn, Adrian Edwards, Rachel Thompson. Publisher: Oxford University Press; ISBN 978-0-19-872344-8 Pub date: July 2016
6.Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ and Couns. 2006;60(3):301-12.
8 shared decision making (SDM) skills training and resources site http://sdmmagicnorth.ncl.ac.uk
10. Joseph-Williams J, Williams D, Wood F, Lloyd A, Brain K, Thomas N, Prichard A, Goodland A, McGarrigle H, Sweetland H, Edwards A. A descriptive model of shared decision making derived from routine implementation in clinical practice (‘Implement-SDM’): qualitative study. Patient Education and Counselling 2019; 102:1774–1785
11. Mulley A, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients’ preferences matter. BMJ 2012;345:e6572
12. Shared decision making to improve patient safety, education, and empowerment. AHRQ Pub. No. 16-0053-1-EF (September 2016) www.ahrq.gov
13. Hunt reveals plan to undo 'historic mistake' of 2004 GP contract
Neil Roberts 12 September 2013
14. Time to deliver patient centred care Tessa Richards
BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h530
15. Shared responsibility for health: the cultural change we need. Prof Sir Chris Ham
16. Twelve myths about shared decision making FranceLégaré, Philippe Thompson-Leduc
17. Karine Gravel, France Légaré, and Ian D Graham. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions. Implement Sci. 2006; 1: 16.
18. Rethinking Medicine
19. Realistic medicine
Scotland Chief Medical Officer’s Annual Report 2014-15
20. Prudent Healthcare
Professor Mark Drakeford. Minister for Health and Social Services, Welsh Government
21. Jack Ross, Ramai Santhirapala, Carrie MacEwen, Angela Coulter. Helping patients choose wisely
22. Joseph-Williams J, Williams D, Wood F, Lloyd A, Brain K, Thomas N, Prichard A, Goodland A, McGarrigle H, Sweetland H, Edwards A. A descriptive model of shared decision making derived from routine implementation in clinical practice (‘Implement-SDM’): qualitative study. Patient Education and Counselling 2019; 102:1774–1785
23. Joseph-Williams N, Lloyd A, Edwards A, Stobbart L, Tomson D, Macphail S, et al. Implementing shared decision making in routine NHS settings – lessons from the MAGIC Programme. Brit Med J. 2017; 357:j1744.
24. Shared decision options realgeneralpractice.org/patients Keith Birrell 2019
25. Feedback from patients, and clinician learners, after listening to and engaging with, shared decision making tools hosted on realgeneralpractice.org Unpublished
Keith Birrell 2018 Nov, available on request via firstname.lastname@example.org
26. Personal experience and the experience of GPs in the Northeast of England and 2 in Glasgow. Unpublished
Engagement from my own patients in 2018-9 has been almost universal.
more details on request: email@example.com
27. Seven practical principles for improving patient education: Evidence-based ideas from cognition science
Martin V Pusic, MD PhD Kevin Ching, MD Hsiang Shonna Yin, MD MS David Kessler, MD MSc
Paediatrics & Child Health, Volume 19, Issue 3, March 2014, Pages 119–122, https://doi.org/10.1093/pch/19.3.119
28 Podcasting in medical education: a review of the literature
Daniel Cho,1 Michael Cosimini,and Juan Espinoza
Korean J Med Educ. 2017 Dec; 29(4): 229–239.
Published online 2017 Nov 29. doi: 10.3946/kjme.2017.69
29 We need minimally disruptive medicine
Carl May, Victor M Montori, Frances S Mair BMJ 2009; 339:b2803 doi: doi: https://doi.org/10.1136/bmj.b2803
31 Gabel P, Edwards A, Larsen M, Kirkegaard P, Andersen B. The LEAD trial. The effectiveness of a decision aid on decision making among citizens with lower educational attainment who have not participated in FIT-based colorectal cancer screening in Denmark: a randomised controlled trial. Patient Education and Counselling 2020 2020;103:359-368
Declared interests: Dr Birrell is lead author of realgeneralpractice.org Realgeneralpractice.org is hosted by the Apperta Foundation. Apperta is a clinician-led, not-for-profit company, supported by NHS England, NHS Digital and others. Neither patients nor clinicians are charged for accessing the website. There are no conflicts of interests or advertising bodies involved.
Competing interests: No competing interests
This is most welcome and very timely.
Baroness Cumberlege will publish the Independent Medicines and Medical Devices safety review on Wednesday 8th July 2020.
The review team have taken a patient focused approach and shown a great amount of empathy when taking evidence. I anticipate the review will make recommendations about the value of patient engagement.
Another great example is the MHRA Valproate Stakeholders Network. It was set up to develop warnings about Valproate use in pregnancy, understanding of the impact of Valproate birth defects and what information prescribers, dispensers and patients need to enable them to give Informed Consent on treatment options.
The MHRA have also encouraged patient groups to give their ideas on dissemination of information and how we would like medication reviews to take place.
We demanded regulatory action and we got it by working constructively with healthcare professionals, medical colleges, pharmacy bodies, NHS, NICE and the GMC.
Contrast that approach with my experience of PPI in local health care where we, as patients, felt as if it was a tick box exercise required of CCGs by the CQC.
In general PPI Meetings run by non clinical staff we were told what was going to happen and had very little opportunity to share our knowledge and give ideas.
The workstream I contributed to was brilliantly chaired, I was treated as an equal and my ideas were acted upon to improve patient safety and the quality of services for children and young people with an Educational Health and Care Plan.
As patients we want to trust the medical profession and our trust will increase when our expertise as patients and carers is valued and considered equal to the medical professionals.
Thank you for all you do.
Competing interests: No competing interests